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Grand Hyatt Hotel
Paul McHugh, M.D. Welcome and Opening Remarks CHAIRMAN KASS: Happy New Year to everybody. It's nice to see Council Members back. Welcome to you all to this the 9th meeting of the President's Council on Bioethics, as we begin our second year of work. I note the presence of Dean Clancy, the Designated Federal Officer in whose presence this meeting is legitimate. The agenda for this meeting is as you can see quite diverse. We're proceeding simultaneously on several of our different projects and we will take up one topic in the second session which is not technically a project of the Council, but we'll talk about that when we get there. Our first session is devoted to the topic "Early Embryonic Development, An Up-to-Date Account." And I think if I might, since this is a sometimes touchy subject I might simply review for Council Members why it is that we are taking this topic up and at this time. First, although the ethical questions are not determined by biological facts, a proper discussion of any of the moral questions regarding embryos should be informed by what is known and many times in the past, major shifts in thinking about the moral character of embryonic life has, in fact, been
– these shifts have been caused changing understanding of human embryology and we're hoping to get some further insight into the various developmental milestones that have sometimes played an important role in the bioethics literature in ascribing so-called moral status to the embryo. Second, Council Members, whether we like it or not, the embryo will be with us as we proceed down the path to offering our report on the monitoring of stem cell research, embryonic and adult, that we have an obligation, I think, to be up-to-date about human embryology and also when one reads and sees that there are members of the United States Senate who talked about unfertilized embryos, and other people talk about blastocysts as if they had hands and feet, it seems to me we do ourselves and the people who read what we produce a service, if in fact, we speak about these things accurately and in an up-to-date fashion. And then finally, since we are pursuing a richer bioethics, we, I think, owe it to ourselves and again to those who would read what we write, to try to quite apart from the question of the uses that are to be made of embryos, in fact, to speak as accurately and as fully as we can about this entity or these stages of the developing entity whose true nature is so much in dispute and which is, in fact, somewhat mysterious. That, I think, is the reason for taking this topic up and also for taking it up in a way from the particular moral debates that we have had before and are likely to have again. I remind you that the house rules this morning are that we are going to try to learn what we can about the biology, certain kinds of biophilosophical questions might be in order, but I will try and preside in order to keep this from turning into an opportunity to score some points in the moral debate about the so-called moral status of embryonic life. We are very fortunate to have with us this morning, Dr. John Opitz, who is the Professor of Pediatrics of Human Genetics, Obstetrics and Gynecology at the University of Utah's School of Medicine. He's also a University Professor of Medical Humanities at Montana State University. And as we were chatting before the meeting, I realized that we can invite Dr. Opitz to come back and talk to us about a whole range of other things of interest and pertinence to the Council. Dr. Opitz will make a presentation and we will then have discussion. Without further ado, let me turn the floor over to you. Thank you very much for being with us and we look forward to your presentation. DR. OPITZ: Thank you, Dr. Kass, ladies and gentlemen, Members of the Council, members of the audience. I feel very privileged and happy to be here and to share with you some data, facts, experiences and insights that I have gathered over a half a century of working in the field of development. And if you think that I don't quite look as old as all that, I'd like to just recall from a personal perspective that when I was a 15-year-old immigrant, newly arrived in Iowa City, the music department where my uncle was a Professor of Cello and Chamber Music was right next to the Zoology Department and my uncle's next door neighbor had been Professor Witschi, Emil Witschi, one of the great founding fathers of modern developmental biology, particularly endocrine development. So my second day in Iowa City, my uncle took me over to Dr. Witschi's department at the age of 15. I became immediately an animal caretaker, laboratory assistant and as of Day 1, I was introduced to human embryology. The very first question that Professor Witschi asked me is well, John, and what is the biogenetic fundamental law? And I said well, I don't know, sir. And right then and there he told me about Haeckel's famous statement that ontogeny recapitulates phylogeny and not only that, he was a historian and his intellectual ancestry, in fact, went back to Johannes Mueller to the very beginning of the 19th century and he had many primary documents from all of those great men from Johannes Mueller to Haeckel to Virchow (?) and of course, to his teachers. So I come from a tradition primarily of European, specifically German, morphology which accomplished a huge amount of work during the 19th century in just establishing the facts of embryogenesis, of thousands of different forms of life and today, I'll focus primarily on human development, but remember that I do so from an evolutionary perspective. And I will not hesitate anywhere along the line to use animal homologies if they serve to illustrate the point I am making. I appreciate also the help of staff who were most kind this morning to help me come to grips with the technology of this presentation. Shortly before I left Salt Lake City, this was one of the cartoons in the paper, so I represent the chap on the left, namely that I'll try to represent the facts as they are or I think they are. Dr. Kass mentioned the word "mysterious" and while the process of development has lost much of its mystery, I never on a daily basis have lost my awe about the very process of development and the coming into being of living individuals from the moment of fertilization to the time of sexual maturity. I'm guided by a few sentiments, namely the old one of Hippocrates, I think is still correct, namely that description is infinite and easy; an explanation is still limited and difficult, especially in the field of developmental biology. Goethe's statement that "we see only what we know" applied to me most quintessentially when it was discovered recently that one of the syndromes that I described over 30 years ago, the so-called RSH or Smith-Lemli-Opitz syndrome, turned out to be a simple inborn error of metabolism involving the synthesis of cholesterol from its immediate proceedings, namely 7-dehydrocholesterol and for decades we had known that these babies, these fetuses have a low cholesterol level, but since cholesterol was demonized as something bad, we never gave the matter any thought that there might be a cause and effect relationship between the low cholesterol level and the child's developmental abnormalities and stunted growth and mental retardation. And then it turned out, in fact, this was a simple inborn error of metabolism, a defect in the synthesis of cholesterol. We again learned Goethe's aphorism there and we learned something extremely important about the earliest stages of human development, namely, that cholesterol is not only desirable, but is absolutely necessary for normal development. The last statement of Goethe there, it's difficult to translate, but what he implied when he formulated the concept of the signs of morphology in 1796 and in the early 19th century is that the study of form, both of embryos and of adults is at the same time an intent to understand its coming into being. Now we shouldn't put more into that statement than is actually there. Even though this was set at a time of Lamarck and Transformism, descent and of evolution were already very widespread and widely debated. All right, so much for philosophy. Let me again try to begin by defining life and I think there exists a reasonable consensus amongst biologists on this definition, namely that life consists of all of the self-contained units of nature considered primarily of organic matter, autonomously and I stress the autonomously capable of undergoing development, reproduction and evolution. Note that this definition excludes the viruses because they're not autonomously capable of undergoing development and reproduction. Now like all scholars, I suppose you've all got a stack of books for Christmas and the one that I got was by Christian De Duve, "Life Evolving," in which he gives the definition of life which I find highly tautological, but which he defends vigorously as being nontautological, namely that life is what is common to all living beings. However, on the same page, there is a sentiment there that I can subscribe to, namely, that there is only one life and it's certainly probably axiomatic that all living beings descend from a single ancestral form. And I will come back to this point again and again during this presentation. Now then, we need a perhaps not an axiomatic, but an operational definition of development, namely that it is the biologic process that is the attainment of the mature form characteristic of a species. Or to paraphrase from one of my earlier definitions, the process which generates a sexually mature organism from a fertilized ovum. And the reason I put the first line in brackets is that in Goethe's original definition of morphology, he included Das Tierreich, and the mineral kingdom as well, and indeed, mineralogists and gemologists and crystallographers speak of the development of crystals, etcetera, etcetera, but strict to the term development refers only to these biological processes. Now in all sexually reproducing organisms, reproduction occurs as part of a life cycle. And there is a continuum of life cycles that takes us back to the very first organism here on earth. Here, out of Scott Gilbert's wonderful textbook, the sixth or seventh edition which will be off the press in just a few days, that is the seventh edition, is the life cycle of a frog. Notice the adult on the extreme left, generating germ cells which lead them to fertilization. And in purple, the purple spot at the bottom of the egg in the two-cell stage, and in the eight-cell stage and so on, that is the germ plasm which was already identified by August Weismann, almost 110 years or so ago, which provides a continuity of germinal information and the separation of the germ line and the somatic cell line during development. Then at the very bottom at 6 o'clock, there is "birth" in the frog which is namely the hatching out of the gelatinous ovum, the formation of the tadpole and then the metamorphosis is the coming on land of the animal after it has sprouted legs and lost its gills, before it loses its tail and then becomes a sexually mature adult in the life cycle of one year. Now let us be sure we understand the fundamental distinction between reproduction and sex. Reproduction refers to the propagation of the species, whether this is by fission or by budding or by runners as in plants whereas the term sex refers to propagation by mating and genetic recombination. That is the exchange of genetic material in a process called meiosis, an enormously complex later edition of evolution to our ways of reproducing and maintaining life during which the chromosome number, the genetic constitution is doubled before it is reduced to a haploid chromosome number. Asexual reproduction results in clones and confers potential somatic immortality. So the clone of amoebas that you have in your petri dish on your laboratory bench goes back to the very beginnings of the common ancestor of the amoeba and of us. And it, of course, does not exclude extinction, but so long as these organisms are capable of continuing to reproduce, they have immortality. It was sex which introduced death into multicellular life. At least to somatic death, but potential continuity of life and I say potential because it isn't guaranteed through the germ plasm. Chris Wiley once put it very nicely in 1999 that the germ cells are the stem cells of the species. Let me perhaps illustrate what I mean in an example which was also in Scott Gilbert's textbook. Let me go back to this slide here. There's a wonderful organism that many of you studied also in high school biology called volvox. And volvox is one of the most instructive early forms of multicellular life. Basically what it is is it's a colony of chlamydomonas or dinoflagellates. They're banded together into this wonderful hollow sphere which actually acts together as a unit. It ordinarily has a half number of chromosomes. In other words, it is haploid and reproduces asexually. However, when towards the end of the season, things get dry in the pond and pond starts to freeze over, then suddenly very powerful sexual induction protein is produced, half of the organisms become male; half of them become female. The females undergo oogenesis. The males spermatogenesis. Sperm packets are released which float toward the female, release the sperm and then fertilization occurs to create a diploid organism. And at 3 o'clock on the right hand side of the slide, you see the zygotes, these diploid organisms which have a very, very tough shell and can survive the winter and then when the spring rains come, meiosis occurs, germination and reduction to the haploid state and a repetition of the asexual cycle. And once that happens, the former adult dies. So there's continuity through the germ line and death of the somatic cell line. Now when we speak of the relationship between sex and death, we're referring to two phenomena here, namely the death of the parents which are mostly somatic events, namely all of those thing which will ultimately kill us through cancer or stroke or hypertension or diabetes and so on, and the death of embryos which are overwhelmingly germinal events. There's an occasional child or adult that dies over a germinal event like a teratocarcinoma or a gonadal blastoma or something like it, whereas most embryos, as I'll explain in a second, die due to germinal events. There are now wonderful websites available to anybody who has a interest in human embryology and in fact, many of the patients that I see in the clinic have already consulted those. Let me particularly point to the last one which is available right here in town, just not very far from here at the Armed Forces Institutes of Pathology. There's a National Museum of Health and Medicine, which now has the Carnegie Collection of human embryos and it was based on the Carnegie Collection that the staging of human embryos was based. And this staging is now universally used throughout the world and that website is available for free. The first one, no, the second one, "From Conception to Birth, a Life Unfolds," by Alexander Tsiaras who incidentally is an artist and he has beautiful 3-dimensional, multi-colored images. The program is available from amazon.com for $30 as a CD ROM. All right, conventionally then, human development is subsumed under four stages. Pregenesis, which are the events that occur in the parents and basically represent a consummation of events that occurred in the grandparents. Then there are two stages of embryogenesis called blastogenesis and organogenesis and then finally phenogenesis are the events that occur during fetal life and post-natal life. Pregenesis, also called progenesis or proontogenesis or the German morphological term is [Vorentwicklung] is a complex process which subsumes the establishment of the germinal tract during parental ontogeny. The migration of the original primordial germ cells which do not arise in the gonads, to the gonadal ridges, ridge differentiation into ovaries and testes, and only then can the production begin of egg cells and sperm cells through the process called meiosis, recombination and germ cell formation. And it ends with fertilization, syngamy and karyogamy. Here are diagrams which are directly readapted from my teacher/professor who actually did the work here in the Carnegie Institution on human embryos on the migration of primordial germ cells. This is an illustration from Scott Gilbert's book, showing the events in the mouse, whereby you can see at the very caudal end of the embryo, on the right hand side of the embryo to your left where it says "alimentary", the red spots in the alimentary yolk sac, hindgut rudiments are the primordial germ cells. And they then undergo a very circuitous, complex route of migration from the hindgut into the gonadal ridges where they will then induce the development of gonads and ovaries. Very early, as these germ cells, as they migrate are alkaline phosphatase positive and you can see on the bottom left hand slide there, three germ cells alkaline phosphatase positive, that's the dark stain in the wall of the hindgut and on the right then you can see as they migrate into the gonadal ridge. And that phenomenon of germ cell formation and of migration into the gonads is an exceedingly ancient phenomenon and is present already is Drosophila. Now, here's an important point. The specification of germ cells identity and the capability of germ cells to perpetuate themselves and to be totipotent, not just pluripotent, but totipotent, is conferred through a very complex cascade of molecular transcription factors, the most important of which up until recently was OCT-4, O-C-T-4, which is a nuclear transcription factor, stained here on the top left hand side, a bright orange-red. So here you can see the inner cell mass of the mouse embryo and that there are a few cells already in the inner cell mass that are probably destined to become primordial germ cells. In the middle top panel, on the tail end of the embryo which is on the bottom of the slide here, with LacZ reporter gene construct, these cells which will become the primordial germ cells are stained a very dark brown. And then on the top right hand embryo, you can see the germ cells migrating, actively like amoebas from posterior to anterior into the gonadal ridges. And on the bottom right hand side then is what the original oogonia looked like after they first established a varying differentiation and the nuclear still shows some OCT-4 staining and the spermatogonia on the left are beginning to lose it, but the oogonia will continue to show OCT-4 expression. And it is one of the reasons and causes of the many failures of stem cell transformation in vitro that if OCT-4 is not re-expressed, the construct will not have the potential to begin development from the beginning. All right, let's rapidly go through blastogenesis. It is the process from the first cell division to the end of gastrulation. In humans (or in the human system) stem, that's day 1 through day 28. That is the first four weeks of development or the first half of embryogenesis, ages 1 through 13. During the first week then there's stages 1 through 4; stage 1, fertilization; stage 2, the first cleavage division; stage 3, the free blastocyst in uterus and I'll illustrate this in a second; stage 4, the blastocyst's actions and begins implantation. Now during stage 3, as the free blastocyst is in the uterus, still in its vitelline membrane, during increasing cell division, the volume of the zygote doesn't increase. And the reason why this is is because of a process of compaction, had been initially a very loose ball of cells. They then grow very tightly together and I'll illustrate this to you with scanning electron micrographic pictures, so that gap junctions can develop between these blastomeres and the cell's cell communication process so necessary for development can begin. Now on the top picture here is the process of fertilization. In the middle picture you see a scanning electronmicrograph, the single sperm having just entered a mammalian ovum, but the most important item is on the bottom panel. There are those four images there show you the formation of the male pronucleus and the female pronucleus and their fusion in the middle or the middle left hand panel in what is the essence of fertilization is not the fusion of the germ cells because that need not necessarily lead to development, but the process of karyogamy. That is the fusion of the male and the female pronuclei so that the diploid number of chromosomes is reestablished, each pronucleus having a half number of chromosomes and only then can the spindle be set up for the first cell division in the beginning of development. On the top then you see stages 1 through 5 and on the bottom, 10 cell embryo, human embryo with a zona pellucida removed on the left before compaction and on the right, 10 cells beginning compaction. And you notice a tight, tight gap function between these two arrows on the right hand side and then in – as you can see, the two little images within the uterus, the blastocyst hatches. And it has to hatch before it can implant on the uterine wall. Stage 5, the embryo is fully implanted. Stage 6, the primary villi appear and the primitive streak appears. Then here's some beautiful images from Bill Larson's third edition of his textbook on human embryology. Here, you can see the little blastocysts implanting. And in blue is the hypoblast and in yellow is the epiblast. So during the second week of development, the human embryo then develops two layers. During the first week, unilaminar; during the second week, bilaminar; during the third week, it is trilaminar. There's further progress in implantation. And then on the bottom you can see the fully implanted human embryo with the amniotic cavity being formed on the left and the primary yolk sac being formed to the right. In blue is the epiblast on top and the hypoblast in yellow on the bottom. Here's the formation of the primary yolk sac and of the extra embryonic mesoderm. Notice now the big, jelly-like space around the embryo. This is the extra embryonic mesoderm and as it cavitates on the bottom right hand panel there, that cavity will form the chorion cavity. The primary yolk sac is then shed and a secondary yolk sac is formed. Again, from the hypoblast, so this is basically then an endodermal structure. During the third week then we see the formation of the trilaminar embryo, the beginning of gastrulation and notochord formation. At stage 8, the primitive pit, the neural plate, neural groove forms; stage 9, formation of the caudal eminence, the first somites, the neuromeres and the primitive heart, too. Now a recent human embryological work has shown that the dating of cardiogenesis, the formation of the heart which is in every embryology textbook is probably too late, that there is a beating heart tube present day 17 already. That's an important to remember. It's not completely formed heart yet, but there certainly is a beating heart to present. And here you can see the human embryo no more than 1.5 or 2 millimeters in size with the amnion cut open. You're looking upon the embryo from top. You can see the primitive pit, the primitive node, the primitive groove. In other words, the primitive streak. And already, two structures are evident, one in front and one behind, namely the buccopharyngeal membrane and the cloacal membrane which are two regions of the embryo where mesoderm never intercalates itself, between the future ectoderm and endoderm. Notice also that this thing has a polarity and indeed the polarity, the future polarity of the embryo is probably established during the very earliest stages of cell division. There's a front end. There's a rear end, in other words an AP axis which automatically defines a right-left axis and there obviously is a dorsal side and a ventral side that is a backside, a topside and a belly side or an underside. Now the quintessence of gastrulation is the establishment of the three germ layers and all metazomes that undergo this complex process of development undergo gastrulation. It's a sine qua non of mitosome development. And what you see here, on the top, left hand panel is at the primitive streak, subduction occurring of the epiblast into the primitive streak, down and underneath and initially replacing the hypoblast to become the definitive endoderm and in red forming the mesoderm which is between the former epiblast now, the ectoderm and the definite endoderm. And on the bottom hand panel, the red arrows then show the migration of the mesoderm between the ectoderm and the endoderm and again, notice the two areas in front and in back where the mesoderm intercolates. The red arrow that points straight from the primitive node makes the prechordal plate. Now it has been shown that even before or right at the very beginning of primitive streak formation, you can label the surface epiblast very carefully the four stratas with peroxidase or with dyes, or with oil droplets and so on and you can follow the fate of the various regions of the epiblast as it is subducted into the primitive streak. And you can identify the future head process, the notochord, the endoderm, the mesoderm and the surface epiderm that will form the neural tube later on. Now during the four then, the end of blastogenesis, the neural folds fuse and here you see an image of the neural folds fusing from the top on down. They fuse initially in the middle, in the middle of your back and then they sort of zipper towards the end, and towards the tail end and the bulges, the symmetrical bulges on either side of the neural tube are the so-called somites which are mesodermal condensations which later on help to give rise to the vertebrae. At stage 11, the primordial germ cells migration in humans, the cranial neural pore closes, the buccopharyngeal membrane ruptures, the optic vesicles and pit are forming. At stage 12, the caudal, that is the tail end, pores close. There's a cystic diverticulum that is a bladder diverticulum, pancreatic bud. The urorectal septum is forming that will separate the anterior bladder from the posterial cloaca. The upper limb buds begin to appear and pharyngeal arches 3 and 4 and then this on page 99 are the final stages of blastogenesis at the end of which the embryo looks as it does on the right hand side. You have the head and notice the change in shape of the embryo. Initially, early during the formation it's straight and then it becomes to curve into the C-shape curve. There are something like 28 somites present, four branchial arches, the heart is pumping, the nasal pit is obvious. The eyes you can begin to see the eyes, the otic vesicle and so in essence you have a reasonably fully formed embryo. Now this image is better seen on the slide projector, if you may please. It did not copy very well into the computer. It's the frontispiece of my teacher's textbook on vertebrate embryology. This is a Carnegie embryo – it's not much better – which he serially sectioned and reconstructed. Now this is not 28 days, but rather 30 days. So it's a little bit later than the canonical end of blastogenesis and there you can see in detail all of the structures, including the primordial germ cells settled in the gonadal ridges in red. That red streak is the dorsal aorta. There's the heart. You can see the eyes. You can see the otic vesicle. So this is what the human embryo looks like shortly at the end of blastogenesis. DR. ROWLEY: And the size? DR. OPITZ: The size is no more than about 3 to 4 millimeters. It's minute still, but nevertheless, it is exceedingly complex already at that stage. Now if you could go back, please, to the – thank you. All right. Now the second of embryogenesis, I'm going to just summarize in this one slide. They are stages 14 through 23. The length then from about anywhere between 4, 5, 6 millimeters to 3 centimeters, that is 31 millimeters. It's the middle to the end of embryogenesis proper and the end of organogenesis, that is the end of the eighth week is what used to be called in classical morphology and I think it is still appropriate to do so, metamorphosis, namely the transition of life then from the embryo to the fetus. And there is a good reason for doing so because this is the time when all marsupials are born, all kangaroos, opossums, etcetera, etcetera, at the end of embryogenesis and they make their way into the pouch and then continue their development on the outside. And the organogenesis is then characterized by two important processes, namely the formation of organs and of histogenesis, that is the formation of cells and tissues. And it was recognized early during the 19th century already as Meiko once said in 1822, that's the das die form vor der Strunktur ensteht, namely, the form arises before structure, that is the growth form before the cellular specification. He said that even before the cell theory and before he had a microscope available. And the embryology textbooks towards the end of the 19th century made this canonical point. Now on the right hand panel then, it's a double panel out of Carlson's textbook. On the top right hand, the small embryo there then is – what's is say there, 4 weeks? No, 8 weeks. So the small embryo in the top middle, 8 weeks. This is what the embryo looks like at the end of embryogenesis and thereafter you see the progressive changes during fetal life. The term phenogenesis has a double use. It refers to the events during fetal life, namely from the 9th to the 38th week of gestation which is equivalent to the 40th week of pregnancy, right? And from the time the embryo is 3 centimeters to when the fetus is 50 centimeters and that growth in length, that 47 centimeter growth in length occurs mostly during the second trimester from a weight of 8 grams at 8 weeks to an average weight of 3,400 grams at birth and this weight is gained mostly during the third trimester. So therefore, the period of phenogenesis is one of tremendous growth, progressive maturation towards post-natal adaptation and the attainment of all of those quantitative traits which constitute family resemblance and ethnic resemblance. So that's a very important difference. Embryogenesis is about the attainment of qualitative differences, eyeballs, liver, kidneys, limbs and so on. And fetuses grow and the anthropometric characteristics change on a daily basis. They increase in length and weight and head circumference, etcetera, etcetera, etcetera. And post-natal adaptation then involves not just the cardiovascular system, the closure of the ductus and of the endoventriculum and endoatrium communications, but continued growth and maturation to change body proportion from little toddler with a huge head and a small body to a more adult proportion as portrayed by Leonardo da Vinci and his Vitruvius cartoon and then finally pubertal changes and adulthood, pregnancy, gestation, parenthood, senescence and death which are normal stages of homogenesis. Remember that even in old age, the nose and the ears and other parts of our body continue to grow. Now let me summarize briefly with perhaps some oversimplification, the development defects of each of these stages of human development. By far, the most common defects of human development are defects of pregenesis and they mostly lead to the lethal chromosomal imbalances, mostly trisomies, also monosomies, monosomy X. In other words, Down's Syndrome, trisomy-21, trisomy-18, trisomy-13 and so on. These are defects of meiosis. It is estimated by multiple sources and authors and has been for decades that at the very beginning of life, of human development, of conception, about 50 percent of all potential human beings have a chromosome abnormality, mostly a lethal chromosome abnormality. Chromosome abnormalities are the commonest cause of death in humans. They kill at the very minimum two-thirds of potential humans, more likely 80 to 90 percent and they mostly do so through these lethal aneuploidies. Now during fertilization, some triploids arise, that is, individuals with a triple set of chromosome numbers and during the first cell division, some cases of tetraploidy with a quadruple number of chromosomes, 99 percent lethal disorders. And the only reason that a few 18-trisomy syndrome and 13-trisomy syndrome babies survive to birth is because of the phenomenon of confined placental mosaicism whereby the placenta, which is a smart organ, chunks out the extra chromosome, establishes a normal cell line and it is the normal cell line that supports the severely defected babies until birth so that they can be born. Down's Syndrome doesn't do that. Down's Syndrome is the only trisomy that does not involve confined placental mosaicism. The defects of blastogenesis then, put parentheses around that, are the gross, mostly lethal, not necessarily, but mostly lethal malformations. And the multiple gross, lethal malformations, there was an entity that used to be called "associations." And I'll spell it in lower case letters, rather than with capital A. The defects of organogenesis then are the later, milder, usually single malformations such as a cleft palate, a cleft lip, an extra finger, a hypospadia. The defects of phenogenesis are intrauterine growth retardation or for that matter overgrowth which is far less common than growth retardation and minor anomalies, namely those – to some extent objective, but also quantitative differences in multiple subtle facial structures which take away family resemblance and which make the parents wonder when they look at their baby, where did he come from? He doesn't look any one of us and that is a red flag. This is one of the most sensitive signs we have for the presence of a chromosomal abnormality because chromosome abnormalities produce multiple, multiple minor anomalies that take away family resemblance so that the parents will then say well, he doesn't look like any one of us. And so on. The defects of histogenesis, I guess is important to mention. They cause dysplasias. All the moles and birthmarks and so on, but also some developmental tumors, teratomas and embryonal cancers. Now could we see the next series of slides, please? They show up much better than – here then is a little Japanese Down's Syndrome – oh here. I can probably advance this. A little Japanese Down's Syndrome child. It used to be thought that the reason for the gravity of this condition is because they had such terrible series major malformations. As a matter of fact, most of the anomalies in Down's Syndrome are minor anomalies. And you can still recognize the ethnic origin of this child and you do sort of a minute point by point comparison between say Caucasian and black and Mongolian children with Down's Syndrome, they look more like each other than they do to their brothers and sisters. In a bad year, this occurs 1 out of 750 deliveries. In a good year, 1 out of a 1,000 deliveries. It's a very common condition. It used to be the commonest cause of developmental disability that we saw in our university clinics. Now we don't see these patients any more because the pediatricians take care of these kids themselves. Now here is a girl, one of the very first ones that David Smith and I studied with Turner's Syndrome. This is an aneuploidy in which the individual instead of having 46 XX chromosome constitutions, got a 45 X chromosome constitution. In other words, a sex chromosome is missing, neither an X nor a Y. This is one monozygotic twin girls and when I first arrived in Madison Irene Uchita and Walter Nams were able to demonstrate that in Turner Syndrome there is an increased incidence of monozygotic twinning. What they were not able to answer was the question which is the chicken and which is the egg here? Does the aneuploidy cause the twinning or does the twinning cause the aneuploidy and to this day I don't know the answer, but the association is unquestioned and I'll show you another striking example of that, namely that in these aneuploidy syndrome including Down's Syndrome and Kleinfelter's Syndrome, there's an increase incidence of monozygotic twinning. It's temperamental. Thanks, Chuck. So let me illustrate just a little bit more. Also to illustrate what the concept of Turner Syndrome means. These two little girls, you can see they're Mennonite girls out of the Lancaster County area, they were born at the same time. The one on the right is obviously a bit of a runt and was brought into the clinic because she is so short and I'll show you the growth curve of these two girls in a second. And the little one showed some signs of Turner Syndrome and when her chromosomes, she turned out to be a mosaic of two cell lines; one, a normal one, 46XX and a Turner Syndrome cell line 45X. And they thought hm, are these two girls identical or are they not identical? They took blood from the normal, bigger sister also and she also had exactly the same mosaicism. She was 46XX, 45X. So are they mosaics or are they chimeras? Then a skin biopsy was done on the little girl. She was pure XO. And a skin biopsy from the big girl, she was pure XX. So what happens is that at the moment of monozygotic twinning at the first cell division when these two blastomeres fell apart and formed – one formed one twin and one formed the other twin, a chromosome, an X chromosome or Y chromosome was probably an X chromosome, was lost out of the cell that made the small girl and the other cell line was normal. And due to placental vasculature connections in the single placenta in these individuals, they exchanged blood cell lines and they became chimeras. So they're not mosaics. They're chimeras. They're grafted, the XX, the XO girl grafted her XO cells into the XX girl and vice versa. Next one, please, Chuck. Here's the growth curve. You see the little one was way below the third percentile before she started to be treated with growth hormone and the growth curve of the normal girl was between 3rd and 50th percentile. Next, please. And when the DNA analysis was done, ignore the two left hand lanes, those are control lanes, but the right, the third and the fourth lane where they used probes for chromosome 2, chromosome 17, chromosome 15 and chromosome 16, you can see these are identical twins. There are several very important points to be made here about this case. Now the defects of blastogenesis which is a common one, Dr. Rowley will recognize this as the handiwork of Dr. Edith Potter at the Chicago Line, the so-called Potter Syndrome or Potter Sequence due to absence of the kidneys. Absence of the kidneys means absence of amniotic fluid, hence these are cramped, contracted and this is the so-called Potter Sequence. So it's a very early defect of blastogenesis. Otocephaly, already well-known by the early French teratologists of the 19th century where there's a defect of the mandibular arch, early defect of blastogenesis, an inviable defect. Next, please. Sirenomeli, named after the mermaid, where there's a single, apparently fused or undivided lower limb, usually with severe genital-anal-renal abnormalities. As you can see in the two upper panels also, radius abnormalities. So multiple defects of blastogenesis or an association, a lethal disorder. Next, please. Here's a defect that Dr. Oscar Borin, a German co-worker of mine and I have studied intensively, so called lumbosacral agenesis where portions of the spinal cord and the vertebral column are missing. In the one baby on the right, there were only four cervical vertebrae missing and most spinal cord below, and interestingly enough, even without a spinal cord, there was normal late development here. And if these kids don't die of pulmonary abnormalities because they lack pulmonary chest power, they have normal intelligence. Severe defect of blastogenesis. Next, please. Anencephaly. Sometimes even with complete absence of the brain and the spinal cord, nevertheless, normal hand and upper limb and lower limb development, so no central nervous system is required for limb development. Next please. This fetus that Dr. Gilbert and I studied that came from St. Vincent's Hospital in Green Bay, sort of the epiphysis of everything that can go wrong during blastogenesis. The only normal parts of this baby are the upper limbs. And you can see that there is an anencephaly the entire face is cleft. You can see the right half and the left half of the nose. There was rudiment of an eye on the left. There were no normal vertebrae at all. There was a single umbilical vessel, renal abnormalities, diaphragmatic abnormalities and so on. Nevertheless, this baby lived to 23 weeks of gestation. And when the parents came in for counseling and that picture on the chart and I've since then adopted this as a practice, on my desk, the mother picked up the picture of this baby and asked me is this my baby? And I said yes, that was your baby and she clutched the picture to her chest and mourned for three or four hours, tears running down, regardless of how malformed and sometimes unrecognizable these products of conception may be. They may be mourned as much as if a normal baby had been struck by a car or died of leukemia, sometime later. Is that the last one, Chuck? The next one looks – yes, let's go on to this one here. Now again, there's a very similar story. This is a quintessential twinning defect of monozygotic twinning again, but here the umbilical cords of the two twins are connected and so one becomes a parasite on the other one and the other one that is with the reverse perfusion, then begins to sort of rot away because of loss of blood supply and so called acephalus acardia anomaly which has been very well known since the beginning of the 19th century. And so as they lose their head and they lose their heart because of the perfusion in the upper part of the body is lost, finally then they lose their toes and their limbs and so on and then ultimately they may just be left as a shapeless, formless, lump of tissue which nevertheless still at times at birth shows some signs of movement and again, the parents may mourn this as the loss of my baby. And so the question arises then, given that this baby and in this particular case this baby was born, still moving at 23 weeks of gestation, the parents preferred that even this inviable remnant of a fetus be baptized and be given a name and that some meaning be bestowed on its existence and its passing. Next. Mine you, the co-twin was perfectly normal. This is a photo that I took in the Virchow Museum in Berlin. This is conjoined twinning. When the events of twinning occur relatively late, notice their tubular columns here. And the co-twin, sitting on the shoulder of the normal twin was anencephalic. This is one of the few specimens that survived a direct hit on that museum during the end of the second World War. Virchow at one time had over 50,000 specimens and there are only a few hundred of them left. Next, please. I would like you to see also the Hensel twins. Many of you may have seen – those are those fixed slides, Chuck. If we can't see the previous one, let's just stick with this one. Did any of you see – there they are – the documentary about the Hensel twins on public television the other day? It was fairly recently. If I were you, I would go. This is a most dramatic kind of a story, that these two girls with a single body and two heads and dramatically different personalities, so different in fact, when they came home one day from school and the dad was sitting there absentmindedly reading the newspaper, one of the girls said, "Dad, we learned to swim today." And the dad said, "Well, which one of you jumped into the swimming pool first?" So you know, absentminded dad. Wonderful, wonderful little girls. Now the question is one soul, two souls. The Catholic Church in this hemisphere began to regulate or to address this question already during the 16th century by ordering that both be baptized. And in this particular case, one is Abigail, the other is Britney and their anatomical arrangement is as you can see here. They've got two heads. Next one, please, Chuck. Thank you. There was an arm between their shoulders which was removed. You can see two sets of lungs, two hearts, a single liver, two guts down to the ileocecal valve and a single pelvis, single anus, single external genitalia, two legs and two arms. How these girls manage with two different will powers and minds to coordinate, let me say swimming or bicycle riding and so on is really a miracle for the neuroanatomists and neurophysiologists. Next, please. All right. Why don't you put a little piece of paper over that and we'll come back to you. If you could return to these – let me see. I need to go forward because I wanted to show you the scheme of twinning which I took out of Ronald O'Reilly's textbook. There's a wonderful scheme which summarizes twinning in – I can't see why I showed you these slides, these Kodachromes because they really did not import very well on this disk, this program at all. Sorry about that. But they take up a lot of memory, so it takes some time to advance slides. The dizygotic twinning in this connection is relatively uninteresting. Monozygotic twinning has been very well studied for a long, long time. And one can make a correlation between the time when the twinning event occurred and the outcome, namely, whether there are two individuals, two amnions, two chorions and two placentas. This is an event most likely had occurred during the first or the second cell divisions when the blastocysts then parted and set up independent housekeeping. The later – during blastogenesis that the twinning event occurs with the midline being developmentally highly unstable kind of a landmark. The greater is the likelihood that you'll end up with a set of conjoined twins. Now the greater is the likelihood that you'll end up then with a single chorion, finally with a single amnion and finally with a single placenta. And the events can occur according to O'Reilly, not let me show you this figure, a similar kind of an experience. This is a fetus that I was privileged to study with colleagues from San Jose, Costa Rica. It's gone again. In any event, the baby that I was trying to show you – yes – very good – was a hemibaby. It was a half a baby. It was the right half of a baby which I suppose in order to survive up until 23 weeks and a weight of 500 grams, formed into a donut like shape that you saw there, so this diagram which incidentally will be in your handouts, shows a hemibaby consisting of – why don't we just leave it at that, consisting of a half – there it is, of a half right baby. And now the question there is half a soul or a whole soul? In any event, the mother went ahead and named the baby anyhow and the baby was buried. This is an exceeding rare anomaly of blastogenesis. I presume that this is the defect of the earliest stages of development, but I really don't know because there is virtually no published precedent about this in the human literature. All right, here's the diagram from Ronald O'Reilly and if you look at the bottom below the dotted line, those are the dizygotic twins. They're basically uninteresting. And starting in the most right hand column from top on down, that has been the twinning event occurs as late as 14 days. There's a time scale on top of the illustration there. And you end up with conjoined twins, as presumably happened in the Hensel twins. And in the extreme left hand side then, if the two blastomeres fall apart and set up independent housekeeping as in one, two, three – the first panel on the right, then you can see, there are two independent – separate intercellular masses, separate amnion and separate chorion and separate placenta. If the fission occurs in the inner cell mass, let me say at Day 5, then within a single blastocyst cavity, you've got two embryos. You've got two amnions, but a single chorion and a single placenta. If it occurs as late as Day 8 or Day 9, then you've got – you end up with a set of monozygotic twins with a single amnion, a single chorion and a single placenta. So the membrane and the placentation situation at the time of birth is – it gives us a good idea as to what occurred and when it occurred. So these then are genetically identical individuals and yet every mother can tell their monozygotic twins apart on the basis of small physical differences, personality quirks and differences, differences in voice and so on and so forth, showing that even though they are genetically identical all development is an epigenetic process that is continuously modified by an interplay between environment and genetic constitution. All right, you've seen that baby. You've seen the Hensel twins. Now my time is over, Dr. Kass, right? And I don't know I should go on any further. The reason I put in this – maybe a few more minutes. This ART business here because of a very interesting and I think rather dramatic new development which I again, by chance, picked up the mail as I was going to the airport, the last issue of the American Journal of Human Genetics had an astounding report in it by ART, the referred to assisted reproduction techniques, which is widely practiced, not just in the United States, but worldwide, affecting as it does 15 to 30 percent of all couples being infertile; 37 to 70 million worldwide, Now these are very gross estimates. In the United States in 1999, 1 out of 150 children were born, were conceived by ART and since Louise Brown in 1978, about one million kids worldwide have been born in some form of ART or another. And about 40 percent of all infertility, we deal with the male factor in fertility. And the practice in ART then involves procedures for the collection of eggs and sperm fertilization in vitro. That is in a petri dish in the laboratory and then the embryo transfer and then the question arises, do you transfer a single one or several? The probability of implantation being relatively low, so that people try to increase the probability of implantation by putting in three or four. Do you put in very early cleavage stages or do you put in a blastocyst and if you put in blastocyst, there is a substantially increased risk of monozygotic twinning thereafter. Now the ART forms then and pardon this dreadful pun, but that's how the specialists themselves refer to it, is still the commonest is artificial insemination by donor. In vitro fertilization first practiced Bob Edwards and Patrick Steptoe in 1969 leading to the birth of Louise Brown in 1978. Then GIFT, that is gamete intra fallopian transfer, this is mostly the injection of sperm into the fallopian tube, allowing normal fertilization occur. Let's say if the tubes are closed or if there is a problem of sperm concentration. Then ZIFT refers to the zygote, interfallopian transfer, I'm sorry, that's a misspell – it should be IVF, in vitro fertilization, interfallopian transfer of a fertilized embryo and then this dreadful acronym ICSI, pronounced "icksy" refers to intracytoplasmic sperm injection and embryo transfer, a technique which arose in 1992 and already the need for it and the technology of it has way stripped our ability to understand the biology that's behind it. And the reason I mention this and then I'll sit down and shut up is because last year I saw a paper and I think it was in the American Journal of Medical Genetics that a child with the Angelman Syndrome had been born after intracytoplasmic sperm injection and that immediately aroused an alarm bell in my mind because if there is a cause and effect relationship between this procedure and the child's condition, then you might make the prediction that not so much Angelman's Syndrome but the Wiedemann-Beckwith Syndrome would occur with increased frequency in children conceived in this manner. Now let me try and explain what these conditions are. The Angelman Syndrome and the Wiedemann-Beckwith Syndrome are two clinically radically different looking conditions. The Angelman Syndrome involving acquired microcephaly, severe mental retardation, seizures, usually no speech development and a very characteristic kind of behavior. And what was discovered in these children is that there's either a deletion of the short arm of chromosome 15 or else an imprinting defect whereby in an attacked chromosome, the gene expression on a short arm of chromosome 15 was altered through abnormal imprinting, depending on from which parent the gamete came, whether it was paternal or maternal. And in fact, we now know that there are several regions in the human genome which are differentially imprinted, mostly turned off, hypermethylated or hypomethylated, depending on whether they come from the mother or through the father. So the process of myosis then may confer an epigenetic modification of the genome by regulating gene dosage, especially during earlier stages of embryo development, whether this is the trophectoderm development or the innercell mass development by differential imprinting of genes. The Angelman Syndrome and the Wiedemann-Beckwith Syndrome are complementary syndromes due to imprinting defects of exactly the same genes on the short arm of chromosome 15. And what people at the National Cancer Institute here across town and at the University of Washington-Seattle have found is that 5 percent of all bavbies conceived in this way have Veidemann-Baechler Syndrome. And so the LOS Syndrome, the large offspring syndrome, that's being described so many times in infants conceived in this manner, now finally has an explanation. These are large because they have Wiedemann-Beckwith Syndrome. Wiedemann-Beckwith Syndrome babies are large and they have infantile embryonal carcinomas. So there's an increased incidence of all kinds of carcinomas and Dr. Rowley knows this a whole lot better than I do that hepatoblastomas, rhabdomyosarcomas, adrenal-cortical carcinomas, what else do you know, Janet? Those are some. So in other words, it may – in spite of all the best intentions here, this may contribute then to childhood morbidity and mortality and to cancer, morbidity also. So our technology got a little bit ahead of our understanding exactly what goes on because during sperm injection the neural events that occur during fertilization in the sperm capacitation and the dissolving of the acrosome, the shedding of the midpiece, none of that occurs and the process then of forming a male pronucleus is dramatically radically altered and different than if you do it. Now I don't know about the other 95 percent of the kids since I don't see those very commonly, but at our university, for example, this is practiced and I will be at pains to call this article to the attention of colleagues and I'm not so sure how this can be prevented. The need, in any event, is enormous for this technology and many, many clinics who practice this throughout the world as a matter of fact, without really being fully aware of the consequences that this might engender. Let me perhaps stop here so that you have time for discussion and for questions and then we would perhaps carry on later on. Thank you very much. DR. GÓMEZ-LOBO: This is a question out of ignorance, of course. When does the developing human organism acquire its genetic material? What I'm trying to get at is this, is there any genetic material coming into the embryo after syngamy. DR. OPITZ: After karyogamy. DR. GÓMEZ-LOBO: After karyogamy. My second question, if I may has to do with karyogamy. Do you have something like in fanciful, numerical estimate of the possible combinations in karyogamy? DR. OPITZ: The answer to your first question is no. Although the maternal genetic contribution which comes through the cytoplasm of the ovum is variable because of the mitochondrial DNA. So the DNA content is not the same in every zygote. It can vary dramatically and considerably depending on what the mother contributes by way of mitochondrial DNA in its cytoplasm. With respect to your second question, you can combinatorily account for variations in every one of the 23 pairs of chromosomes. So the number of combinatorial permutations that you can get out of a fertilization is astronomical, especially if there has been exchange of genetic material, but in homologues, so that in fact, except for monozygotic twins, the probability of having two identical human beings, same parents, is much easier. Did that answer your question? CHAIRMAN KASS: Robby George. PROF. GEORGE: Doctor, thank you for your wonderful presentation. Is an embryo of any mammalian species something distinct in kind or nature from developed members of the species in question or is the embryonic stage a stage in the development of a determinant member of the species? DR. OPITZ: It's a stage. So there is, in other words, increasing potentiality, increasing valuation towards birth, towards full maturity, but in humans, remember that's a relatively arbitrary cut off point because 200 grams, 300, 400 gram babies may survive, born prematurely. PROF. GEORGE: Is there any biological sense now, any biological sense in which an embryonic or fetal cow, let's say, is prebovine rather than bovine in nature? DR. OPITZ: No, it's always bovine in nature from the conception. That was the point already emphasized by Von Baer in the 1820s, that even though the early embryonic stages may look remarkably similar, if you look closely enough from the very beginning we have the unique and distinctive development path whereby increasingly you can tell the development from one species to the next species and so on. PROF. GEORGE: I was wondering how early in embryonic development in humans can we detect the production of an immunosuppressant that would prevent the rejection of the embryo by the mother? DR. OPITZ: That question I don't know. I am not a biologist, but I do know that human gene expression occurs very early already in first or second cell division. So unique gene expressions occur very early during embryogenesis. Now mind you, many of these gene expressions are generic because the generic body plan that may say of mammals and vertebrates, all is built exactly the same by using exactly the same molecular machinery so that you have initially the molecular expression patterns in very early zygotes and embryos is more phylum-like, you know, Class, Order, Family, you know genos-like and then later on as development proceeds, it becomes more, more and more specific to the species and then finally to the individual. PROF. GEORGE: Thank you, Doctor. CHAIRMAN KASS: Michael Sandel and then Janet Rowley. PROF. SANDEL: Thank you. I have two questions about the rate of natural embryo loss in human beings. The first is what percent of fertilized eggs fail to implant or are otherwise lost? And the second question is is it the case that all of these lost embryos contain genetic defects that would have prevented their normal development and birth? DR. OPITZ: The answer to your first question is that it is enormous. Estimates range all the way from 60 percent to 80 percent of the very earliest stages, cleavage stages, for example, that are lost. PROF. SANDEL: Sixty to 80 percent? DR. OPITZ: Sixty to 80 percent. And one of the objective ways of establishing the loss at least as of the moment of implantation, well, even earlier, let's say as of five days because the blastocyst begins to make a chorionic gonadotrophin and with extremely sensitive assay methods, you can detect the presence of gonadotrophins, let me say, first around Day 7. That's the beta of human chorionic gonadotrophin. And if you follow prospectively the cycles that has been done on quite a few occasions in the Permanente study in Hawaii and so on, a group of women, of nonfertility, who want to conceive and you detect the first sign of pregnancy there of human chorionic gonadotrophin, about 60 percent of those pregnancies are lost. It is independently corroborated by the fact that the monozygotic twin conception rate at the very beginning is much, much higher than the birth rate and then if you follow with amniocentesis, the presence of the two sacs in about 80 percent of cases,the second sac disappears, one of the sacs disappears. CHAIRMAN KASS: The 60 percent then would be of those that have at least reached the 7 days so that you could trace the – so there might be even greater loss at the early cleavage stage, is that correct? DR. OPITZ: That's correct. And the earlier the stage of loss, the greater the rate of aneuploidy.
There exists sort of a standard, textbook formula whereby 60 percent of spontaneous abortions have a chromosome abnormality. Six percent of all stillbirths and 6/10ths percent of all live born children. Now the latter figure is probably closer to 1 percent if you include some growth variants. So that's sort of a rule of thumb. In my own lab in Helena where I did all of the autopsies on all pregnancy losses for 18 years, the rate of chromosome abnormalities was a little bit higher. PROF. SANDEL: So if we take the 7-day stage, it's 60 percent. The 80 percent is if you go back to the moment of fertilization. But if you take just starting at the 7 days, there's 60 percent rate of natural loss. And of those 60 percent that are lost from the 7-day stage, what percentage of those have abnormalities or defects such that they wouldn't otherwise be able to be born? DR. OPITZ: I would say somewhere around 50 to 60 percent and mind you, many of these are empty sacs, tiny, tiny stunted little embryos, but when you culture the sacs you find a chromosome abnormality, even though the embryo has vanished already. PROF. SANDEL: So of the 60 percent that are lost at the 7-day stage, 40 to 50 percent did not contain defects or abnormalities, could have been born? DR. OPITZ: Right. PROF. SANDEL: And become babies. DR. OPITZ: Your point is well taken, which doesn't mean that the chromosome abnormality isn't there. There's a wonderful lady, Dagmar Kalousek at the University of British Columbia, who has studied this question very intensively and published on it and incidentally the question that you addressed is a reference to that in the bibliography which is in your handout. Of course, this presentation will be a handout in which I tediously enumerated all of those data that are being published until recently. And Dagmar Kalousek has shown that even the low chromosomes are apparently normal for XX on structural abnormalities, they may be abnormal. The commonest chromosome abnormality in humans is chromosome trisomy-16 which you may detect at chlorionic villi sampling and then at amniocentesis, it's gone. And what the embryo has done is it has chopped out the extra chromosome out of the somatic cells, but in the process it has a two-thirds probability of forming an isodisomic pair whereby both homologues either from a mother or from the father – they look perfectly normal, but there's the defect. And so it is even recommended that you do imprinting studies on every pair of chromosomes, even in those that are apparently normal and nowadays, with subtelomeric probes, we can even discover additional things because if the embryo is grossly abnormal, let's say it's a 10 millimeter embryo under the dissecting microscope, the changes are that it is a chromosome abnormality. So the selection against chromosome abnormalities in humans before birth is enormous, it's over 90 percent. I would say probably even higher than that. CHAIRMAN KASS: Janet Rowley? DR. ROWLEY: Well, I think just to follow on with this before I ask my own questions, what has been learned by these kinds of studies is that nature is remarkably effective in identifying its mistakes and in disposing of those mistakes before they develop, they can't develop into a normal fetus, so that this is really the – I think, one of the lessons that we've learned from this. PROF. SANDEL: Janet, could I just interrupt just to ask a point of clarification on this. Of the 60 percent that are lost from the 7-day stage, they're not all mistakes, are they? Some of them are, but you were saying they're not all mistakes. DR. OPITZ: They may appear normal, but almost by definition they can't be normal because they died. There must be some reason for it. Now it could be placental. It need not be intrinsic, but remember, that a major portion of the placenta also is of fetal origin. PROF. SANDEL: Sorry, Janet, go ahead. DR. ROWLEY: No, I think that's – one of the things that you didn't touch on that's important, I think, is the relationship of aneuploidy with age and we've often focused on maternal age, but I think there's evidence in some of the chromosome abnormalities that paternal meiotic errors are also involved in this so that was my first question to ask you to amplify on that. And the other issue that I wanted to bring out is the importance of environment and environmental influences on embryology and I realize in one sense you can say this is a lecture in itself, but we know, for example, that neural tube defects are very high. Women in poor areas that don't get folic acid, then a simple way to not take care of all of these, but to diminish the frequency of spina bifida and other things is just to make sure that the mothers get adequate nutrition. In what we're learning about many of the defects that you illustrated here, I wonder how many of those might also be apparently of some consequence of environmental exposure. DR. OPITZ: You raise three important points. I guess one of the major impetus for the development of prenatal diagnosis is this relationship that Dr. Rowley alluded to between maternal age and nondisjunction or the presence of chromosome abnormalities with women reproducing at the age of 45, having almost a 1 out of 7 chance of having a chromosomally abnormal baby. So there's a direct linear relationship between maternal age and the presence or a chromosome abnormality. It is also true as Dr. Rowley has pointed out, that there is some relationship with paternal age, mostly in the occurrence of new mutation, that is of gene changes, rather than of chromosome changes, but some of the Robertsonian, I think, translocations may also arise with increased paternal age. The influence of the environment, it cannot be underestimated. Even though amnio, chorion, placenta, you know, buffer the fetus to some extent, nevertheless there's a very active circulation from the mother to the baby and it is very important that where we can prevent birth defects due to environmental causes, we do so and one of the most rational and most effective defects, not just for neural tube defects, but for other major defects of blastogenesis, including congenital heart defects, has been the introduction of the recommendation that every woman wanting to conceive take at least 4 milligram of folic acid per day in order to prevent these common defects. Now in the state in which I worked for 18 years, Montana, by far the commonest environmental defect that we saw was the fetal alcohol syndrome which is 100 percent preventable. And on certain reservations and I will footnote that statement, we estimated that 60 to 70 percent of all kids born on the reservation had fetal alcohol syndrome, Rosebud was a particular example, but the Crowe Indian Reservation, the Northern Cheyenne Reservation, the Blackfeet Reservation were similar, but in our overall patient cohort that we were examining in Montana before my wife and I left, my wife being a particular expert in the fetal alcohol syndrome, 30 percent of them were non-native, you know, Caucasian individuals, smoking. And particularly the combination of smoking and drinking and it has a dramatic effect on the placenta. So interuterine growth stunting occurs very, very commonly and then there's a whole raft of medications that are known to cause birth defects and environmental abnormalities of the baby. CHAIRMAN KASS: Could I ask – these are – they're partly biological questions, but with a certain quasi-philosophical edge to them, if you wouldn't mind. One has to do with the question of individuation which is one of the issues that comes up here and I ask how the phenomenon of twinning, how that enters into what one regards as the thing which gives rise to twins, whether one sees this really as something whose individuation is yet undetermined and only can be somehow guaranteed after the time of twinning is past, or whether one sees twinning as some kind of a response to some abnormal event in an individual to which this is then somehow a reaction. And second, I'm interested also in the question of wholeness and both as a biological fact, but also for what – for its bearing on things like blastomere biopsy when one removes, let's say, as many as two out of an eight cell stage and what the implications are for the residual organism. In Dreisch's famous experiments, as you know, one took half and yet one was still able to produce a whole and I'm puzzled about that here and if I might just add, I was very interested in the difference between the stage of the early embryo when the cells seemed to be in there, lacking the compaction and lacking the intracellular connections and wondered whether from an embryologist's point of view, that's somehow crucial as part of the answer to the question about whether you have a whole yet or whether you've got something other? I'm not sure the questions were stated as well as I would like, but I think you get the drift. I'm interested in the question of wholeness and the question of individuation as a biologist sees these. DR. OPITZ: Well, I think every fertilized zygote has the potential of becoming monozygotic twin. CHAIRMAN KASS: Everyone? DR. OPITZ: Everyone. Just simply because of the phenomenon that the midline which is established very early, even has the phenomena of polarity before you can even see a midline at the primitive streak and so on, the midline is morphogenetically highly unstable and I once enumerated all of the biological attributes, you know, of the midline which would support this kind of a statement, with most of the products of monozygotic twinning, then dying. That is the co-twins. And the surviving co-twin, having a very high incidence of additional midline anomalies, heart defects, vertebral abnormalities, etcetera, etcetera. So this would seem to be an intrinsic attribute of the midline. Now your question then of wholeness is also well taken because the – it's beginning to be shown in mammalian embryogenesis that already at the time of the first cell division the axes for the polarity of the embryo are being set up. And that removing, let me say 2 out of 8 or 2 out of 10 blastomeres may perhaps disturb this, but interestingly enough, as in the Roux versus Dreisch experiment, some individuals have regulative development whereby they can heal and repair and start over again as if nothing had happened and then sort of redetermine the remaining eight blastomeres as if they were whole and others like in the sea urchin, for example, when you take those two away, then in fact, that part of the body is missing.
And so which is regulative kind of development. My preference is to look at instead of wholeness as integrity, developmental integrity and the individuation issue then developing an impact after the risk of twinning has past, after 14 days. But even if it did occur and you've got the Hensel twins, you have two individuals in one body. And even the half baby, you know, was a living human organism up until about 23 weeks and 500 grams and it even had a beating heart. CHAIRMAN KASS: Thank you. Frank Fukuyama and then Bill and I think we will break. PROF. FUKUYAMA: Are there any chromosomal abnormalities that don't show up until a much later stage of development, when the individual is an adult or by the time they get to an adult, do you pretty much know? I'm thinking of this, for example, just with IVF and some of the ART procedures where the – Louise Brown is still in her 20s. Is it possible that things will show up at later stages that we simply don't know about or is once you get past a certain age, you're pretty much home free? DR. OPITZ: It's possible, Dr. Fukuyama, but unlikely. There have been some adults who started to reproduce and all of a sudden miscarriage after miscarriage after miscarriage and then you begin to investigate and you find that you've got a chromosome abnormality, usually in a mosaic form. And usually if development is abnormal on account of a chromosomal imbalance of abnormality, you will see it at birth or shortly thereafter. Or let me say during infancy or childhood, if the individual then is a little bit slow, is not doing well in school and is then brought into the clinic for evaluation, so I think it is unlikely, but the point is well taken. Let me maybe, if you don't mind rephrase the question, what chromosomal abnormality should we be alert to as a concept of these ART forms, and one of them is imprinting. It's an imprinting defect and where the chromosomes look perfectly normal, there's no deletion there, there's no X chromosome or missing chromosome, but the genes are not expressed properly at the right time and the right place because of faulty imprinting and that can persist into adult life, into later childhood and embryonal carcinoma. CHAIRMAN KASS: Bill Hurlbut and then we'll take a break. DR. HURLBUT: I want – DR. ROWLEY: Can I just interrupt just because I think it's important to clarify that when, in the instance that Dr. Opitz gave of a woman having multiple miscarriages due a chromosome abnormality, there are things such as gonadal mosaicism where some of the oocytes developed in that woman as he's already shown, the gonads in her are developing during the – well, before the 24th week of gestation. Those abnormalities will only show up in the oocytes that she produces as an adult. Then there are other meiotic errors where a gamete is chromosomally abnormal, but that error in formation in that abnormal gamete probably occurred just in the cycle or just before the release of the oocyte. At least I think that's correct. CHAIRMAN KASS: Bill Hurlbut, please. DR. HURLBUT: I want to follow up on Leon's questions and try to make some sense of the moral meaning of these matters and if it's okay, I'd like to ask Professor Opitz' opinions on the moral matters. Is that within the – CHAIRMAN KASS: I will reserve the right to cut you off, if it seems to break the rules. DR. HURLBUT: Okay, I ask this in the spirit of really wanting to understand these issues myself and I guess what's in my mind is why don't all the cells at the various stages up through the blastocyst even until the formation of the primitive streak, why don't each of the individual cells go on to form a trajectory of distinct development? In other words, there must be something binding them as an integrated unit in the drive of the direction of the individual maturity. Let's start with that, is that – DR. OPITZ: So what you're addressing is the question of determination, progressive determination during progressive differentiation. For the on-going developments, the more determined is the developmental fate of these tissues. Now we used to say once you've got a brain made, those brain cells, you know, are terminally differentiated. When they die, they can't ever be replaced and there's no – etcetera. Now, of course, through the work of Irv Weissman and many others, we know that there are, in fact, even in the brain there are stem cells left over which can rejuvenate and can give rise to various kinds of cell lines in the brain, including the supporting cells, the astrocytes, the oligodendra sites and even neurons. Now during the course of normal development, these matters are constrained, phylogenetically constrained into only very, very few specific outcomes. Now you can probably start over again taking certain pieces or certain cells as has been done, certainly successfully in a mouse and in other mammals and so on, but the further on in your development, the more determined is the outcome of the specific developmental process. DR. HURLBUT: But you did say there is polarity, even as early as cell division. DR. OPITZ: And it is potential polarity in the sense that if you don't disturb the system, you can recognize the meridians and the anterior, posterior, right and left and dorsal and ventral sides already during the earlier stages of cell division. If you disturb the system and take out, for example, those two blastocyst cells, the system can
re-equilibrate itself and can reestablish communication between each other so that the remaining cells will say, all right, we'll start over again or we'll
re-equilibrate the system. And this phenomenon of developmental, how shall I say, equilibration or homeostasis was recognized very early during the 20th century and Waddington called this canalization or buffering and the earlier the stage of development, usually in mammals, the greater is this buffering capacity to repair, to heal and to reconstitute, also at the same time the greatest vulnerability then towards major disasters happening like twinning, for example. DR. HURLBUT: So this restitution of the integrated process can take place sometimes in two trajectories of development, if the disturbance is great enough, but there is from the beginning a drive in the direction of a single maturity and it's only when it's disrupted that it becomes two? What I'm getting at here is you said that there are early cell divisions. There seems to be gene expression. Is there even differential gene expression fairly early like four to eight-cell stage and could we see that as the development of a single individual in which case some events may disturb it which become then two individuals, but – see what I'm getting at? DR. OPITZ: Yes. I wouldn't say the development of a single individual. I would just say, gene expression pattern appropriate to the cell at that stage of development. And then after the establishment of the basic body plan, that is when you begin to see the establishment of the specification of cell lineages, specific cell lineages and one of the last few issues of Science had a wonderful article in it on the specification of the germ line, for example. And the interesting thing is that these – you're starting off with totipotent cells in the inner cell mass or a few of the inner cell mass cells. And they then become part of the somatic component of the posterior, the rear end of the embryo, the allantois, the yolk sac, the hind body and so on. And then they are respecified through the developmental context, environment in which they happened to be developing into germ cells. And you can, in fact, take nowadays single cells and do microarray genetic analysis of the gene expression patterns of these single cells and this is how it was discovered that germ cells in mammals, that is in mouse, certainly are respecified as totipotent cells from the development of milieu in which they were and were influenced. And it's mostly interferon which does it and then suddenly the cells that have been respecified begin to express two proteins which are unique primordial germ cells. DR. HURLBUT: One final question and Leon may veto this question. We've had to struggle here with this question of when there is intrinsic moral value in this developing entity and the criteria that had been used in various deliberations on this worldwide relate to primitive streak and so forth. Usually, the principles being some kind of differentiation which you seem to indicate is already taking place in its primordial forms very early, the issue of twinning, which you say is a fairly ambiguous issue, and then third, implantation. I didn't ask about implantation, but my assumption from my scientific understanding is that it's a difference of quantity, if you will, not quality. There's already growth factors influencing the developing embryo in the fallopian tube. But I want to ask you your feeling about the moral meaning of this, is there some sense in which before say 14 days there is something of different moral meaning at 14 days? DR. OPITZ: Bill, let me be – I don't mean to be a moral coward here, sidestep that issue, by not addressing my – or expressing my moral feelings about the subject which I think is slightly besides the point because I have a strong suspicion that everybody in this room has got their own moral feelings and opinions on the subject, but I do – the point I want to make very strongly is this, that there's a continuum in developmental potential to the very moment of conception. As a matter of fact, there's a continuum even into the germ cells which ought to be treated with exactly the same respect as the fertilized ovum, as the implanting ovum, as the developing embryo, simply because germ cells, for example, are extraordinarily vulnerable to teratogens, viruses, x-radiation, chemicals, etcetera, etcetera, etcetera which in the long run, being damaged in any one of these wanton and random kind of race may harm humanity infinitely more than the loss of a trisomic baby. CHAIRMAN KASS: Dr. Opitz, thank you very much for a lucid, illuminating and forthcoming presentation and response to the questions. We've run over to take advantage of Dr. Opitz' presence and generosity. We're running probably 15 minutes behind. Why don't we start at 5 after the hour. We'll steal 15 minutes from our long lunch. Let's take a break and then go into the next session. (Applause.) (Off the record.) SESSION 2: PROCURING ORGANS FOR TRANSPLANTATION: ETHICAL CONSIDERATIONS
CHAIRMAN KASS: Council Members, could we get started, please? Council Members will find at their seats a blue sheet with information on where we're gathering this evening for dinner and there are three additional handouts here that are pertinent to tomorrow. Let me just mention them while we're looking at this. Professor Merrill who has sent in an advance paper, sent along the notes which are the outline for his talk and suggested that Members might want to have it in advance. And then there are the latest issue of the Archives of Pediatrics and Adolescent Medicine has an essay on the "Psychotropic Practice Patterns for Youth: The 10-Year Review." And then an editorial from the same journal on this question of prescribing psychotropic medicine to children. I'd like to ask Council Members to just glance over these things in relation to the discussion we're to have amongst ourselves in the last session tomorrow morning. This is not for careful reading, but at least to help us get started in thinking about how we want to proceed in the area of neuropsychopharmacology with special attention to children. In this session, we will be discussing the ethical considerations in relation to procuring organs for transplantation. The Council has neither determined, nor has it been asked to study organ transplantation, yet the topic is going to be of increasing interest. The Secretary of Health and Human Services has indicated his own grave concern regarding organ supply and I'm pleased to see that we have with us Jack Kress, who is the Executive Director of the Secretary's Advisory Committee on Organ Transplantation. They have their first report soon, I think, to be issued. The AMA and Congress have variously considered plans and legislation to increase the supply. Legislation was introduced into the last Congress and is likely to be introduced again. And therefore the Council might be invited into these discussions, but in any case I thought it would be worthwhile if we would engage ourselves in the preliminary consideration of some of these proposals that are floating out there to increase the supply. We are not altogether new to this topic. Already in Gil Meilaender's survey paper, "Toward a Richer Bioethics," in the very first meeting, the meeting of embodiment, the relation of parts and wholes and integrity were questions that were raised. We had that short story which at least some of us liked in the donation of the heart, "Whither Thou Goest," to at least address this question of part and whole. We had some discussions on commerce and the body, more in connection with patenting, but that was an issue of concern here. And it does seem to me that in keeping with the search for a richer bioethics, the full human and moral significance of innovations and practices growing out of the relation to advances in biomedical technology belong to our domain. A background paper that was prepared was intended to bring to the Council's attention the range of practical suggestions that are now under discussion to increase the organ supply, but to do so in the context of questions that deserve further attention and in the background paper, at least these were mentioned and raised for view, the value of saving life, the desirability of preserving bodily integrity and respect for mortal remains, and the importance of individual autonomy of the potential donor, as well as the rights and responsibilities, needs and wishes of surviving family members. But I would at least like to add to the questions for consideration two points. One, the need to appreciate the heterogeneity when we come to talk about organs and supply. There are different organs for different diseases with differing success rates and differing age and ethnic populations, of donors and recipients who have also not only different medical conditions, but also differing cultural attitudes that affect this problem. You cannot, it seems to me, talk about supply neutrally without paying some attention to why it is that some people do and other people do not donate. In some cases, expressed fear of decreased care, if one is known to be a potential donor, inhibits some people. There are other people who might express concern for bodily wholeness in death when they go to meet their maker. It seems to me terribly important that we not homogenize this subject and treat in the abstract. And then a more philosophical question, not necessarily for discussion, but something to keep in mind is the human body really like a car with completely fungible and replaceable parts, not just morally, but even medically. Medically, of course, we have the immune rejection problem which no automobile has, suggesting that there is some kind of difference between us and simply a heap of spare parts. To talk about the person that somehow survives the replacement of these parts invites the kind of person, machine or person-body dualism and one of the questions I think that we want to keep in mind is what kind of a view of ourselves are we tacitly promoting, not only in organ transplantation to begin with, but how might that view be affected by the varying proposals to increase the supply. The culture is not homogeneous on this one. We don't have a single answer, but it does seem to me that those larger questions of self-understanding are at issue here, in addition to the questions of just saving lives, of respecting the wishes of the deceased. With that in mind, I think I can summarize the present situation as follows. The present policy seems to be that organ transplantation is a great good. The practice is donation with individuals and also families free to decide to donate, but only to give and not to sell. Allocation being separated from supply. We have an allocation system with triage based on need and the probability of success. In view of the tremendous, the growing shortage of organs, the list of people on the list of waiting for donors increases faster than the increase of the supply with large numbers of deaths now off the list. I'm thinking now especially of kidney donation. A number of proposals have been made and they are summarized in the background paper, between the system we now have, a system of giving and receiving, of organ donation and a system that they have in certain European countries which is called either routine retrieval or in this country it has the euphemism of presumed consent in which the organs are taken unless there is objection. A number of proposals in-between from public recognition and community pressure, honoring donors, shaming those who don't, to some kind of system of public compensation, the most widely discussed example would be either some kind of credit on tax return or donation, public donation toward funeral expenses, to more vigorous promotion of outright markets of buying and selling, have been in the discussion over the last several years, increasingly so. And whereas earlier proposals of required requests were trying to put pressures on physicians to make sure they asked, the new proposals are designed to provide increased incentives for people to donate whether those incentives would be honor, some kind of public compensation or actually cash in terms of the free market. And it seems to me that it's, I think, worth our while to have at least this preliminary discussion as to what we think about these various proposals that are out there and without any prejudice as to which way this conversation goes, I think we should get started. I will say that I've asked at least three people to be prepared to offer some comment; Dan Foster, to make sure that we didn't misunderstand and forget the medical perspective; Rebecca Dresser, to give us some insight from the legal side; and Bill May, who has written very movingly on the newly dead body and honor embodiment, to make sure we don't forget that aspect. So if I might, Dan, if you wouldn't mind starting us off. If that's unfair, I'll go elsewhere. DR. FOSTER: No, I'll be happy to make a comment or two, not that they're very profound or that I know a whole lot about that. Certainly with Bill May sitting in the wings, I wouldn't want to say too much, but I think that in the background we have to think about the fact that one certainty of life is that we're going to die. I jotted down Bertrand Russell's famous statement from "A Free Man's Worship" where he says "one by one, as they march, our comrades vanish from our sight, seized by the silent orders of omnipotent death." It can come early or late, but against the scale of historical time, it always comes quickly. I was involved with the – in the death of a colleague at another medical school at the ceremony, who died early from asbestos exposure at his own university. But the speaker said something that I thought was very moving to me. He said, "Life is but an instant. It is the quickest thing. It is over before we turn around. In this brief instant, there's only time for love." It's always very short against historical time. Now death comes from disease or from entropy. You'll remember that the Second Law of Thermodynamics says that entropy is always increasing in a closed system. I always liked Heinz Pagel's explanation of entropy for nonphysicists. He says if you take a salt shaker and you put pepper on the bottom and salt on the top and you have a top screwed on that has no holes in it, and you turn it up and down, then randomness becomes complete, the black granules and the white granules are completely mixed. Now one can reverse that if the system is opened. If I pour it out and put it on a sheet of paper, I may laboriously with work separate out the salt and the pepper and reconstitute order, but in a closed system, it's always running down. We have an open system that keeps us alive. We have oxygen, water and a few vitamins and fuels and that keeps us alive for a while, but it doesn't stop entropy. In fact, a classic example in the transplantation business is that the kidney which is where we have the most experience with a perfect match, runs down in about 30 years. Those are Tom Starzl's numbers. He's talked to me about that. And when you biopsy the kidneys as the creatinine tends to go up, they're not being rejected, it's not a late rejection or autoimmune defect, they're just running out and we have to retransplant them if you're going to do that. I have a close friend who has three of his four children have renal failure and they've all had transplants and the first one is now at 32 years and his creatinine is starting to go up. But we are concerned mainly here with the issue of premature death, in some sense, even though life is very short. And what medicine tends to try to do is to prevent premature death and it doesn't necessarily have an interest in preventing entropic death, that is the simply running down with time. We talk about that all the time. The mother of a prominent person in Dallas has a glioblastoma. She's 80 years old and the people that she went to see operated on her and gave her a very, in my view, outlandish optimistic prognosis and so she was planning to take a trip to Europe in 2004. She's going to be dead in six months. And the question is whether she should be radiated at 80 years of age with the side effects and taking away that time. And so in the conversations with the chair of Neurology and the chair of Neurosurgery, we all say this is silly. Let's let her live her life and not try to fight these, this late disease. So transplantation is to prevent premature death and as Leon said, there's a great shortage of organs. I certainly agree with the view that we have to be specific. I mean kidneys are one thing. Hearts and lungs are another. I mean you live a long time with kidneys and it's so much better to have a transplantation than to be on dialysis that it's something that is just not arguable. What you may not recognize is that this long list of waiting for kidneys, and I'm going to focus on them for just a second. It means you may die because dialysis is not real good. You certainly don't have a good lifestyle on dialysis, but what we don't – what most people don't recognize is that the longer you wait when you need a transplantation, the less it works. In other words, if you transplant – the data now are very strong that if you transplant early with kidneys you do much better, so the shortage of organs is a serious one. Now what do we do? I want to say gently that some of the solutions really strike me as foolish in the real world. Goya once said that "the sleep of reason brings forth monsters." I think that saying we're going to give a medal to somebody to donate or $300 for a funeral that cost $5,000 to $10,000 or to appeal for altruism, to think that those will solve the problems are foolish. In my state we are required to ask at every death, the attending physician for organs and we do that. I've done it a lot of times and we do pretty well at Parkland Hospital, particularly with minorities where it's harder. We at one point, I don't know whether that's still true, had more donations from African Americans for transplantation than any other hospital in the country. We worked hard on it. But there are many forces, for example, funeral home directors actively tell families not to do that because it's harder to embalm when you've taken out these things. I mean there's an active lobby at death not to allow transplantation because it's going to make it harder on the funeral director. So the question that we come to is money and money usually talks. I mean our whole society is based on that. I spoke with three transplant surgeons this week in preparation and they say that I am extraordinarily naive because even in this country for living donors, the payments are going on, right under our eyes, despite the federal laws and everything else. And nobody talks about it. My own view in thinking about this is that incentives are never going to work. You may decide you don't want to increase this, but incentives are never going to work. I think money talks. And this is big business. If you get seven organs from a body and it goes to an organ bank, let's say you get two kidneys, a heart, lungs, maybe a pancreas, corneas, not to talk about bones, the amount of money that's charged the hospital is very great. I didn't have a chance to get the exact amount where I work, but they oftentimes will charge thousands of dollars, even though they're nonprofit to the hospital to do it. A transplant surgeon, I think is paid by Medicare $1800 to do the procedure and they won't allow any work up until three months before you have to do it. But privately, the surgeon may make $30,000. So all the transplant surgeons said you all are naive. Everybody – it's in the papers and in The New England Journal, too – is making money out of this except the people who are most involved. And so I don't think these incentive plans that I've read about are going to do anything at all. Now I worry, very much about the coercive effect of money on the poor for living donors. I mean I really do for things like livers. As you probably read, we've already had a number of deaths from donors, even of kidneys, 56 or something like that. I don't know. So it's dangerous. As an aside, I think that everybody who gives, who is a living donor, should be supplied, particularly if they're poor, with catastrophic life insurance and with life insurance – I mean catastrophic health insurance and life insurance. I think that should be – that's a payment. My own view after thinking about this is that we ought to concentrate on increasing the organ supply on cadaveric organs and not living donors. And I think that I would be very willing to pay substantial amounts to families for the donation of cadaveric organs which puts no one at risk for the donation itself, and in good transplant centers, cadaveric organs do very well. So if I were going to be making a policy, I would say I'm willing to pay, I'm going to increase the cost for the health system. It will all be passed back ultimately to us for taxes or increased insurance rates and so. It's going to cost. You may decide it's not worth trying to add a license on there, but I'd pay for it, so I would make absolutely clear to a family there are still issues there, that if they donated they could make some money out of it along with everybody else. That's the only way that I can see that this, that a system like this, that this would work. I don't know, how much should it be? I don't know. In talking to the transplant surgeons I've talked to, I thought $5,000 for – you know, you could put it for one organ less or something, but I'd pay for cadaveric organs and I'm pretty sure that there would be a significant increase in organ availability if we did that. Where I am now, what's probably going to happen like everything else, I would be against paying for living donor organs because of the danger to the person and because of the possibility of coercion to people who don't have resources or strengths to do it. So those are just a few of the thoughts that I had in terms of how we would go. They probably don't mean very much and I'll just toss it out there, and as I say, it's one of these 10 minute things that you can toss into the garbage if it doesn't mean anything, but that's what I would do. I would concentrate, as I've said twice already, on the cadaveric source which is very large and wasted to a large extent and many of these will be the kind of organs that you want, traumatic deaths from car wrecks and so forth. And I say in passing that at least middle class families that I'm aware of and people, those particularly who have been able to – particularly people who have been in religious faith, really do feel a sense of partial grief relief when their loved one's organs are used for the maintenance of life. I don't think that's a fake. I've seen that. Now why it is, I don't know. CHAIRMAN KASS: Thank you. In the interest, actually of having some coherent conversation, let me invite some responses to Dan Foster's comment before asking the others to add their comments to be raised here. Charles? DR. KRAUTHAMMER: I just wanted to ask a question. You talked about selling already is going on, could you tell us about how that works? I'm just curious. DR. FOSTER: I have no hard data for this at all. This is anecdotal from talking to people who are transplanting organs and what they – and these are people who are – these are not the sort of surgeons that I don't respect. I mean they see a lot of things. And what tends to happen is that there is a surreptitious, I mean it's mentioned in some of these papers. There are surreptitious promises of financial reward in response to advertisements or personal talking about people who – some who work for an employer or something of that sort and nobody talks about it. I mean there is a presumption that nobody will talk. Well, sooner or later, somebody is going to talk anyway. I couldn't find out what the usual, you know, what all three of these people had experienced what the price was. And they don't have hard data about that, but what they think is, what they tell me is that they think that this goes on – they know about it happening because a few people have told them. DR. KRAUTHAMMER: This is from living donors? DR. FOSTER: Yes, living donors, all living donors. I'm not talking about cadaveric. I don't know of any payment for cadaveric things. It's the living donor payment that I'm talking about. It's very soft. I want to make it clear that this is just a statement, but three people told me that they thought that this was much more prevalent than what we had thought was going on. CHAIRMAN KASS: Janet? DR. ROWLEY: Well, first, if I can just follow on this line of conversation before I ask my own question. I understand from you that there is somebody here representing transplant surgeons and since this is a question of fact, would it be possible to see if the person representing the transplant surgeons might give us factual information, if that's available? CHAIRMAN KASS: I misspoke. I mentioned the presence of Jack Kress, who is the Executive Director of the Secretary's Advisory Committee on Organ Transplantation, if you have some comment on this. MR. KRESS: It's purely anecdotal. DR. ROWLEY: I think we need information, whatever – recognizing from your comment that it's not the – not scientifically obtained or things of that sort of thing. MR. KRESS: No, I really don't have any data at all. I'm sorry for coming up here with all of this and then telling you I have nothing to offer – it seems like a real waste of time – on this issue. It's purely anecdotal. DR. ROWLEY: Which is? MR. KRESS: Which is that some people weigh that particularly, as you know, in the living donation area, one of the things my committee has spent a good time on recently is ensuring that there's – trying to ensure there's no coercion of the living donor, that it be freely given, as much as possible. And in the conversation surrounding that, there's often the speculation that there is familial coercion, quite frequently, because the vast majority of living donations are with family members. So siblings, for example, feel coerced by the family and on those where there are employment relationships, there's often the suspicion that money played a role or something of that nature. I actually have not heard that part of it. I've actually heard much more about the familial coercion rather than the money, I must say, just in response to what you said. But again, I have no hard data to offer. DR. HURLBUT: May I add? CHAIRMAN KASS: Please. DR. HURLBUT: To both of you, is there a better outcome with an organ from a live donor? MR. KRESS: My understanding is that the data at the moment indicate that it is slightly better. DR. FOSTER: I think the key word is slightly, slightly better. I think most – you know this is relatively knew, particularly giving parts of livers and things like that, you know, so I think that it's slightly. You would expect it to be because of the ischemia time. I mean by the time you collect an organ and fly it someplace and so forth, there's going to be some anoxic damage to that thing and so I wouldn't have any argument at all that if you could get a living kidney from a living donor or something that it would be better. MR. KRESS: And they are also much more able to check whether or not the matching is more perfect, etcetera, but just because of the time factor involved in death as opposed to someone who is living. DR. FOSTER: I do think one of the things that has shifted because the advance in immunosuppression has really become, is really remarkable, that there's less concern about matches now then there used to be and besides what we usually test for, there are many other antigens now and alleles that appear to be involved with both
graft-versus-host reaction and so forth that are not part of the major histocompatibility complex, the HLA molecules which are the main things that we usually match for. So that's developing. But there are also many more, well, I don't want to get too technical, but I saw a fascinating experiment in our own institution that changes the rejection of cells or organs. This happened to be with islet cells that replace insulin production in diabetes. I mean it's so early, I'm not even going to tell you what it was, but it's one of the most dramatic experiments I've ever seen. I might be false, because it's only a few animals. But I mean there's going to be changes so that it will be much easier, even if things are not matching, you don't have to have all this immunosuppression that's so hard to deal with. CHAIRMAN KASS: Thank you. Janet, did you want to ask a question? DR. ROWLEY: Yes, because in the material that you sent us, you indicated that in Europe, with the exception of Britain, that taking organs from cadavers was a relatively common practice, so I was wondering what the experience is in countries, advanced countries where this is a more common practice. Do they have the same long waiting lists that we do? What's the outcome of using these? What tissues or organs are actually included in cadaveric transplants? MR. KRESS: Unfortunately, the waiting list problem exists overseas as well. So I don't think that necessarily is the solution. People are discussing it, of course. That gets into the whole presumed consent and all of that where Belgium and some other nations have that system. And internationally – Spain is often spoken of because of the Spanish model in terms of their version of it. They have a higher rate than we do in the United States, but how translatable all of those are to the American system is always an open question. CHAIRMAN KASS: Why don't we – thanks very much. Unless people want to put more questions to Dan or follow up on his comments, I was going to call on Rebecca. Alfonso? CHAIRMAN KASS: Rebecca, you want to – PROF. DRESSER: These comments are not particularly from a legal perspective, but just from teaching and reading about organ transplantation for quite a few years. I am – I have a lot of reservations about paying people to provide organs or families to provide organs, but I do think there is a fairness or a hypocrisy problem with prohibiting it and Dan mentioned it. It really struck me, I read Julia Mahoney's 2000 Virginia Law Review article which is cited in the articles we received, and she does really an excellent job of making this case that the debate is really not about commodification of organ transplantation, it's heavily commodified. It's just the initial step that's not commodified, the initial transfer from the person who has the organ to the procurement organization. Everybody else makes a lot of money on this and you can see that whenever they propose changes. I understand there are data showing that transplant centers where this is done a lot have better results, so there have been efforts to try to concentrate transplantation more into these centers and then there's always a lot of opposition to that from other hospitals where they are doing transplantation and most people say it's economics. I mean these hospitals make a lot of money from this, as well as the surgeons and so forth. So something that is initially a gift, Mahoney argues, is transformed into something that's actually sold to the recipient. Now she says people would say well, the recipient is just paying for services, but without the organ, the services really aren't worth much, so the organ is critical to what the recipient is paying for or the recipient's insurance is paying for. Now, we might say that all these other people are being paid for services. You could probably say it would be force the services model on at least some organ donation and this is what I think we do in research and in people who provide oocytes, sperm, other tissues, blood sometimes, where the compensation is characterized as for the time and trouble people put into the process as opposed to the thing itself. Certainly, a living organ donor puts a lot of time and trouble into that process. I'm not sure how much time and trouble – the cadaver doesn't, but perhaps the family does have to put some energy in and a services model could be imposed. I think it would be a stretch. But on the other hand, the idea that well, everybody else in the system who's getting paid, it's purely based on services. I think she makes a good point that the services aren't worth anything without the organ. Paul Ramsey and others who argue that if you put money, attach money to the initial transfer, this would deprive people of the opportunity to be altruistic. You might flip that around and say well, maybe we should change our whole system, all these other components, we could be saying well, we're depriving all these other people of the opportunity to be altruistic. I mean the doctors could donate their time, the hospitals could donate the services, so maybe we should just change the system so none of it's commodified. I think we all know it wouldn't work. I remember being struck a few years ago and this may be an example of hard cases make bad law, but a story of a family, of a person whose organs were given and they didn't have enough money to pay for her funeral and so she had to be buried in the Potter's Field and meanwhile the surgeon was making a good salary and so forth, everybody else was financially comfortable and it did strike me that there is some unfairness there. Now the question then becomes are there persuasive reasons for saying this initial organ transfer should not be commodified, is there something different or distinct or dangerous about coercion or with families? Would they be more likely to say well, stop treatment and those kinds of questions. And I think that's worth discussion. On the other hand, the question is could you regulate the market in this first step so that you could allow commerce, rather than prohibit it. Another thing that I've thought about is the step of donating all of us donating, signing our donor card or putting it on our license, it actually seems to me a fairly trivial exercise of altruism because most of us probably won't die in ways that produce brain death, so that our cadavers would not be in the best condition for transplantation. They are working on other – getting organs from so-called nonheart beating cadaver donors and – but really, the chances that somebody who signs a donor card or who exercises his altruism at this earlier stage that their organs will actually be taken because of age and health, they're pretty low. So it seems to me very – it's easy for me. To me, the true altruism is the family and the cadaver donor situation. That is, they're the ones who I think bear the emotional burdens and so I wonder if that affects our analysis of whether altruism or payment is preferable to locate the altruism, at least for me and the next of kin as opposed to the individual whose organs are taken. If we allow financial or some other benefits, say a family member is put higher on a waiting list, if you agree to be a donor, then I think the system has to take into account the very low probability that the organs will actually be usable, so the nature of the benefit, that goes to others when you agree in advance to donate is not that significant. I think another point that's important to remember is that the results of transplantation are mixed and the slogans always say it's lifesaving and so forth. It is lifesaving for many, but not everyone and of course, it depends on the kind of organs we're talking about. And many people have complications and compromised quality of life. Now certainly if you ask most of them would they rather have gotten the organ, they say yes, but it's not – these organs do wear out and sometimes it sounds as though you're giving sort of life forever if you donate an organ and it is a possible life, not necessarily as healthy as an ordinary person has. I think it's unclear what effect payment would have on satisfying a supply. We know that. The point is though that even if it does, we'll still be having this conversation in 10 years. Anything that increases the supply will not get rid of the waiting list because the waiting list is long and also people don't get on the waiting list now who would be put on the waiting list if the waiting list weren't so long because of their other health problems or so forth, they never get put on. So I think if we were going to do something on this area, I think we should try to examine what's the nature of the social obligation or the obligation to be a good Samaritan, to provide organs to those in need. This is related to Leon's point about why do people not give organs? There's a complicated set of reasons. Do we want to say that everybody who doesn't give organs is a bad Samaritan? You know, what is the nature of that obligation? And on the other side, what is the nature of – is it an entitlement to expect that you will get an organ? If not, you know, this whole idea of people dying on the waiting list, what kind of a moral violation is that? How troubled should we be and so forth? And then finally, what about the obligation to get organs to people who are well qualified in terms of health and so forth, but they don't pass the so-called wallet biopsy? That is, they don't have insurance that will cover this. They're not able to get it covered by Medicare or Medicaid, excuse me, and so what do we owe to them? If we were to start paying people to give – for providing organs, that money will have to come from somewhere. Is that – so that would raise health care costs. Is that money well spent or given that we have so many people who lack access to basic health care, is the best way to spend limited dollars to channel that money to other forms of care? So those are my thoughts. CHAIRMAN KASS: Thank you very much. Why don't we follow on with Bill? DR. ROWLEY: Can I just – I think one of the points in your very last statement that you didn't really take into account is the fact that dialysis is an extraordinarily costly and costly to the public health system or the insurance system. And so that you have to balance that enormous cost, compared with the cost of providing that individual with a functioning kidney and I don't think that you introduced that sense of balance in your last comment. PROF. DRESSER: Right. I was mainly focusing on if we did decide to pay people for organs, we'd have to get the money somewhere, so if we had extra money to spend on health care, is that the best way to spend it. CHAIRMAN KASS: Janet's point would be that these people are now on dialysis and therefore, the money used to pay for the transplant might be in that saving, if I understood her. PROF. DRESSER: Right. CHAIRMAN KASS: Bill May? DR. MAY: A word first about the history of the discussion, as I've experienced it across the last 25 years and then some reflections dating back to Leon's reflections on the wisdom of repugnance, the whole question of feeling and the relationship of religious rights to feelings and so forth might be bringing to the attention of the group. In the early 1970s and again, in the late 1980s, when I and others wrote about organ transplants, the discussion focused chiefly on two alternatives, individual giving which we've talked about here and the other alternative that was chiefly discussed was routine salvaging, individual giving linked with the prevailing system of opting in, in common law countries. The requirement of opting in seemed respectful of the quasi-property rights vested in the family for the purposes of a decent burial, but it, of course, did not supply enough organs and so created other pressures. The second alternative, routine salvaging, presumes consent, unless and only unless the individual of the family opts out. You talk about European countries, I gather even where that system prevails, the tendency is for doctors to ask anyway. It isn't quite the explicit, routine salvaging that it seemed to be. And some worry that this system dangerously overrode sentiments, rights and symbols. Culturally, one tended to associate the requirement of "opting in" with the Anglo-Saxon common law tradition and its greater emphasis on individualism and volunteerism and the provision for opting out with the Continental traditions of civil law, where the individual and the family bore the burden of withdrawing the body from the commons, as it were. The debate, in fact, was more complicated than individualism versus communitarianism, individual rights versus the states' prerogatives. Paul Ramsey, for example, in the chapter we've read, argued that a system of explicit giving would help to shore up consensual community, a shoring up from which community itself in the long run stands to profit. So that it isn't simply isolated individualism versus communitarianism. Today, the continuing shortfall in the supply of organs has generated
pressure, once again, for an alternative to giving, but this time,
not routine or near routine salvaging by government authority, but
buying and selling in the marketplace. And of course, once one moves
in this direction, the wrinkles multiply. In our reading, this was
quite obvious, and as the staff paper indicates. For example, futures
market where individuals agree before a death to sell their organs,
and receive cash payment or lowered health insurance rates while
still living, would one have to rewrite the contract constantly
over time as the product ages and deteriorates? Kind of interesting
problem. Or insurance rates rising with aging and the cash value
of the body still inconveniently at hand, declining as a downpayment
against premiums. Now critics worry that the marketplace, left to its own energies tends to respect no boundaries. Neither the body as a whole, nor any of its parts, in this setting tends to be tinged with the sacred. The existentialists used to say that we not only have a body, if that's all it was, then it might be sold as property in some senses, important senses, we also are our bodies, as media, of disclosure of ourselves to others and so forth. And in the setting of the marketplace and spirit, the thing tends to have whatever worth someone is willing to pay for it and another to sell it for. And of course, to facilitate sales more efficiently, could brokers set up a kind of e-bay auction of
pre-used body parts with suitable protection of the purchaser through regulations, guaranteeing transparency and truth in advertising. To avoid some of the vulgarities of the marketplace, Congressmen have offered bills proposing a tax credit from $10,000 to $25,000 for the provision of an organ. Once again, the ironies abound. Let us suppose a rich man and a poor man both provide kidneys for their daughters. The rich man's kidney is worth $25,000 as a tax credit and the poor man's kidney in the eyes of the bill is somewhat worthless. One moralist complained about the effort of economists. It's very interesting. It was an economist who talked about the distinction between buying and selling and the gift relationship and that was Titmuss in the book with that title. And one tended to distinguish sharply between the arenas of giving and receiving and selling and guying. He pointed out that a Southeast Asian, this critic pointed out, that a Southeast Asian who is willing to sell a kidney for $2,000 to supply a daughter with a dowry or to educate a child, that's an extraordinary noble act on the part of that person. It isn't simply ruthless selling of something that one has. It's a noble act. But as I see it, the nobility of a particular act of selling does not redeem the tawdriness of a social system that would force a straitened individual to resort to this act of generosity. A health care system ought not solve the health problem of the desperately ill through the desperately poor. And this applies with particular force with respect to living donors. Now to return to the question that Leon raised earlier, if I may, is you know you wrestle with the problem of our natural revulsion of the prospect of cutting up the body for the sake of extracting organs. It's human sentiment here. We can be given to the mysticism of the marketplace, but doesn't it reach its territorial limit with regard to commodifying the body, this initial first step that Rebecca talked about. However, such powerful feelings such as revulsion are morally neither infallible, nor automatically decisive. I think it's interesting that Leon himself, of course, made this point. For practical purposes directed to important ends, we dissect the body in gross anatomy, conduct
post-mortems and authorize autopsies and so forth. Thomas Aquinas emphasized the importance of a rational control of our aversions for the sake of good ends, in his discussion of the virtue of courage. The philosopher Joel Feinberg pled for the rational control of aversive feelings. He argued in favor of the routine salvaging of organs, even though the bereaved might react emotionally to the cutting up of the corpse for the sake of organ transplants. He observed in his presidential address before the American Philosophical Association that our aversion to cutting up a corpse should give way to a "careful, rational superintendency, and education and discipline of the feelings." We cannot construct a social system entirely on the basis of our raw feelings. We should not sentimentalize the sentiments. But reason, it seems to me, doesn't provide us with a sole means for disciplining our feelings. Religious symbols and the rites by which we appropriate them can help express, but also contain and discipline our most powerful feelings and I want to explore this whole issue. Indeed, religious symbols and rites may strengthen much more than appeals to reason our capacity to secure organ donations because religious communities, for better or for worse, not reason, shape most rites surrounding death. A word about – I'm not an anthropologist, but a word about the whole question of the emergence of funeral rites. Some students of funeral practices have pointed out that flight characterizes the most primitive human response to a corpse. Flight reflects more than an instinctive hygiene or an individual aversion to a dead body. Entire villages have been known to move to another location to avoid any further contact with the corpse. This powerful human aversion, however, does not escape discipline. Funeral services arose, at least partly, as a way in which the community could contain and appropriate the dread that it experienced before the newly deceased. Analysts today have come to respect the psychological necessity of such rites, the living can pass on to mature life only through death and through their consent to the death of those who were close to them. The development of funeral rites, therefore, represents a secondary response of containment on the part of the community to force itself to be present to death. It doesn't allow raw feeling alone to drive it. The community must discipline its aversion. It must still its feet, as it were, before death and stay with the deceased. This form of presence, of course, doesn't wholly eliminate the original aversion. The community becomes present, after all, with the intent of removal. It burns or buries the corpse. The community no longer journeys away from the dead, but removes the dead from its presence. The original element of aversion and dread persists, even within the constraining form of funeral practice. And of course, societies traditionally vested in the family through the notion of
quasi-property rights, the responsibility for burial. Such property rights were quasi in the sense that the family could not put up the cadaver for commercial use or sale, but rights they were in the sense that no other party could normally interpose claims upon the corpse that would interfere with the families right and obligation to provide for a fitting disposition of the remains. In other words, whatever use and abuse, conflicts and tragedies a person has suffered in the course of his public or private life, the society cannot reduce him or her to those events or to a marketplace utility. Jacques Maritain would call this Sophoclean insight, Antigone comes to mind, the principle of the extraterritoriality of the person. Therefore, are we stuck with a containment of sentiment through burial practices, normally vested in the family only to render the corpse untouchable and the rites of burial and cremation unchangeable. I think not, for funeral rites themselves have already contained in discipline the original raw impulse to avoid and to flee. But now where does that leave us? It seems to me today, we haven't yet adequately explored organized giving. The power of feeling, as I've tried to articulate it, argues that bland appeals to reason and to the general ideals of altruism and philanthropy will not suffice. We may need to appeal not simply to the superintendency of reason, but to the religious traditions themselves in their shaping symbols to develop sufficiently powerful reasons, religious and moral, securing organ donations. Indeterminate appeals to the public at large through media appeals and advertisements on buses and subways or a signature when you're getting your driver's license renewed, will not likely generate enough donors. Purely individual appeals lack organizational momentum, even though it's an organization that is organized, these individual appeals. They also address the isolated individual, one on one, exactly in that condition and circumstance which most resembles death itself, the individual, solitary and removed from community. To secure substantial support for organ and tissue donations, one may have to go beyond a tepid legal permit and general appeals to individuals. We may need to mobilize institutions, chiefly religious institutions, since most funerals, for better or for worse, still occur under religious auspices. Now a word simply about Christianity, not because I think one should ignore the whole question of the other traditions in a kind of society in which we live and not that Christian tradition could or should be legislatively decisive, laws based on Christian ethics alone would likely be divisive and therefore objectionable on Christian grounds as well. On the other hand, the Christian Church remains a major Western institution with significance for better or for worse, for millions, especially in the area of funeral practices. Its attitude on organ transplants could have considerable impact on the success or failure of programs for blood donation, organ and tissue retrieval. Now I won't bother discussing the negative obstacle within Christianity itself which was, of course, the whole notion of the resurrection of the body which led to the replacement of ancient practice of cremation with burial. And the whole issue emerged for Augustine as to whether therefore burial was a precondition of the resurrection and Augustine said not on your life, it's a miracle enough involved in all this. It's an office of humanity burial. There was nothing essential about maintaining the practice of burial as a kind of precondition of the Christian affirmation of resurrection. Well, that only deals with the whole question of negative obstacle on all this, on the question of positive warrants. Are there positive moral and liturgical reasons for the act of giving? I think there are. Moral reason, self-expending love defines the life of the one who is the focus of the faith. He lays down his life for the brother and the sister, the neighbor, the enemy and the stranger. This love calls for concrete service to the bodily needs of others, their hunger, their thirst, their illness. There are, of course, two limitations to this service. One, some chance of success and two, the sacrifice or must ordinarily not neglect those duties to himself or herself that will sustain a capacity to serve. That's real reticence about most forms of live donation. Second, there is that extraordinarily liturgical warrant for transplants. In its central sacrament, Christians believe that Christ shares, under the form of bread and wine, his body and blood, his self-expending love. Fittingly, believers may participate in the substantive love by their readiness to share a portion of their bodies and blood with others, when their bodies no longer sustains a future capacity to serve. While Christian ethics and worship, I think, encouraged transplants, Christians, I suspect, would have to draw back from the sentimental and inflationary rhetoric of symbolic immortality through such deeds. My child died in the accident, yet he lives on by supplying others with a heart and a kidney. We should rather talk simply about the assistance. I think it was Paul Ramsey who put it this way, that one mortal being renders to another who after all one way in his own right or her own right in time, will have to do his or her own dying. CHAIRMAN KASS: Anyone dare to speak? (Laughter.) CHAIRMAN KASS: Gil Meilaender will speak. PROF. MEILAENDER: I did have some notes to myself whether – and some of them follow up on what Bill had to say, in fact. I have three comments, I guess, comments, questions. I'm not quite sure what they are. One, as someone who is – I don't know what the right word is, just tentative or hesitant or skeptical about the whole undertaking, and I think actually, although I understand that none of us ever knows until we're in the position almost more hesitant about the receiving, being a receiver, a recipient, than a giver. I sometimes wonder in my pessimistic moments whether acceptance of organ transplantation is really not the crucial step, in fact. And I think in a way it's a useful way to think about. In other words, if you once have given your imprimatur to that are we sure that there are really sort of determinative reasons for saying but it may only be done by say a method of giving and receiving donation. There may be arguments that tilt us in one direction or another, but I just – I think it's worth thinking about and perhaps talking about, whether the crucial step is learning to think of the body and its parts in a certain way and after that it's just refinement under the ineluctable force of claims about shortages and so forth. I'm not so sure about that. Certainly, and this actually – two things to take up what Bill said, even if we're going to stop, even if we wanted to press for some kind of system of giving, altruistic donation, all – I, myself, find it unattractive and unappealing to think we're beginning – your word, Bill – mobilize institutions to encourage this. I'd find myself another congregation, if mine started to mobilize itself to do this, I think. One of the other things that Paul Ramsey said was that when Christians began to wax eloquent about self-giving love and the way it can give, even the body, that physicians would have to remain the only Hebrews who reminded us of the body's integrity, I'm not clear that we can rely on physicians to fill that role any longer. I'm not sure who will, but a spirit of self-giving does not in itself necessarily constitute what Christians call love. I mean Bill would disagree with that, I'm sure, but it needs more thought. So that's my first point that it's really the fundamental question that in some sense needs thinking about. Second thing, it's true, as Rebecca said that there may be something paradoxical about denying the possibility of commodification at the first level and having everybody else get rich off the process. And actually, I'd be quite happy to think of a system whereby the transplant surgeons could not get rich, but I suppose she's right, that that would be hard to do. But nevertheless, I think there is a certain kind of difference here. I mean for instance, when they wheeled me into the operating room, I want my surgeon to think in a rather detached way about my body and even think of it as sort of a collection of parts that fit together. It would be very bad if that surgeon spent his whole life thinking of his wife and his children and so forth in the same way. There are different moments in life when we have to think in different ways. And it's commodifying at the very first step is to some degree inviting us to treat ourself or those whom we most love in that way. And so there may be a difference to be thought about still there. It seems to me at least again, I'd want to think about that. And then the third question that came up, about whether there might even be an entitlement to such thing or you'd have a civic duty to do such a thing, language that I find very unappealing. It seems that if ever it is clear that we do not belong to the whole of our being, to the community that we inhabit, death is the moment when that's clear. And that office of humanity that burial requires is kind of the last – it's not just the reverence and the tribute we pay to that person, but it's the acceptance of the fact that he or she did not belong entirely, wholly and entirely to us. So that whatever else we say, it seems to me we ought to recoil from that notion. So I guess my point would be one, I really do think the procedure itself raises crucial questions and one has to think about whether once you've approved it, the rest is just a matter for interesting arguments, but nothing very decisive. I think that there is something different about that first step because it involves how we're learning to think about ourselves or those closest to us. And I think we maybe have some reasons to back away from any kind of entitlement language. CHAIRMAN KASS: If I might, Bill, do you want to respond, Bill May, to Gil directly? DR. MAY: Well, the way you put it, I tried to incorporate the whole question of the individual does not belong wholly to the state. That was the point made in Antigone. In one sense, one way of interpreting burial is not simply the person doesn't belong to the state, it belongs to the family, I don't think that's quite right. I think why it's located in the family, in a way, the family is the one who has most used up this person. And so there's something fitting about doing this in the setting of the family by way of release of that person. I think that's one unspoken dimension of funeral rites. It's not some, simply an occasion which the aurora borealis of the person extends into the future in mortality by way of memory and into the future, but that's one way of seeing the funeral service is it allows for the extension into the family, the radiance of this life. But it's the occasion in which the family is forced to acknowledge release, put in the ground or whatever, it's done and then you walk away. That's in part, insisting on the power of those rites, the importance of those rites, it seems to me, would interpret the event in that way. But that argues also, it seems to me, for involving the family in the final decision as to whether the person will be released for use in this further form. I understand the problem of justice that Rebecca raised with regard to first step, but I think ironically what you do in order to make that just is you simply completed the last step in the commodification and increasing pressures upon those who consent to sell. And I think that's going to fall disproportionately on the poor in the setting of our culture. And so yes, there is an irony of this is the only one who doesn't make money, but it still clears out – it doesn't simply complete a closed system of handling this entirely through the newfound – not the newfound, but the old wondrous mechanism of buying and selling. So it's important preserving that first step, it seems to me, as it bears on the significance of human feeling towards the newly dead and the rights that we mount in relationship to that dead person. CHAIRMAN KASS: Let me join in too, if I might. I also think that one shouldn't – I've heard the argument and I think there's some merit to it, saying everything else is commodified, why shouldn't the person whose organ this is somehow participate, but the transplant surgeons would get the same amount, roughly the same amount of money, perhaps, if they put in a mechanical piece, a mechanical organ in its place. The fact that we have all kinds of – we have a commercial system of medical care doesn't finitely determine whether we should absorb organic parts of either recently deceased or of living people into that system. And I agree with you, Gil, that in a way the original question about the meaning of our embodiment, the challenge to it that comes from allowing the transplantation of organs is somehow primary, but as I tried to argue and puzzling through this myself, it does seem to me that it is in a way moderated by the gifting of it, so that one is not simply just transmitting body part, but as in any kind of gift there is the sentiment of generosity that accompanies it and if you simply treat the body part as a body part, inalienable, which to some extent it is, you have somehow already done some kind of violence, but I think we can find a theoretical way of overcoming our initial repugnance of this if we somehow stay within the language and the practice of giving. Whether we don't somehow really radically underscore what might be questionable about this practice once we start the buying and selling of these parts, is one of the reasons why I'm a little hesitant to cross this line. Just two other things to the side, I really do think there is a major step here and that if we think simply in terms of increasing supply without paying attention to what it actually means to put the body parts themselves in commerce, we will be missing something of the sort that Bill May is talking about. Two things. First of all, the system of organ allocation, having now been federalized and bureaucratized has in a way moved the relation of donor to potential recipient – you have to think of the universal national community, rather than the communities in which one actually lives out one's religious life at least as it is agreed, so part of this kind of appeal is somehow obviated by the desire for efficiency and in fact, fairness so that you don't simply have certain kinds of unfairnesses in the local place. Second, I would at least want to raise a caveat about this concern for the poor which I do share, but the economists, and by the way, I should see that people get, these are my colleagues at AEI that are referenced in the staff paper, but they're calling for an outright system of buying and selling, partly on the grounds that it's patronizing. I mean who are we to somehow to say to the poor that you can enter into this, maybe, but only at some kind of fixed rate and whereas we – our concern for them keeps them out of the one system in which they might be able to turn something to advantage? I say that with nervousness, but it seems to me it's part of the – it's part of this discussion. Gil, do you want to respond? PROF. MEILAENDER: Yes. I appreciate what you say about the sense in which keeping it as a kind of a process of giving might retain a certain kind of – my key point from thinking of it simply as alienating some part of the self. I understand that. Some days that persuades me and other days it doesn't. But I had two questions for you on it: Are you attracted to language where people might talk about organ donation as in a sense almost kind of conferring a kind of immortality, carrying on the sense, that's one. And, are you attracted to occasions when people want to somehow know and stay in touch with the person in whom some loved one's heart or something lives on? You see, it seems to me that you ought to be, at least I try to think about it, you ought to be attracted to both of those, if you want to make that move with a giving language. And I not personally attracted to either of them, so I just wonder. CHAIRMAN KASS: Yes. I better retreat on the first and confess on the second, too. I do think that there's something about all acts of generosity, all acts of generosity that carry with them the giver to the recipient. "The giver is alive in the deeds as received." It's a wonderful passage in Aristotle's Ethics, in fact, where he raises the question why does the benefactor love the recipient more than the recipient loves the benefactor? You think it would be the other way around. There are two answers. A vulgar people say the benefactor loves the recipient because the recipient is in his debt and therefore he somehow wants to make sure that some day he'll get it back. But the more profound answer is the benefactor loves the recipient more than the recipient loves the benefactor because the benefactor lives in the recipient, the way in which the poet lives in the poem. And there is a way in which it seems to me these acts of generosity, I'm not talking about immortality, but there is a way in which one's being extends through acts of love and generosity into the lives of other people and it seems to me there's no reason why the gift of one's body part can't partake of that same kind of generous spirit. On the other hand, as I perhaps alone in that discussion of "Whither Thou Goest" thought that while it's a creepy story, while it's a creepy story, the heart that now beats in that other man is not altogether and absolutely the other man's heart, not absolutely. And that's part of the funny thing about what it means. I mean a heart is a special case, all of that, but to the extent to which we really are our bodies and rather than hitch a ride to them, then these hands, these gestures are also part of who I am. So I don't know where that leaves me on the question of policy. I'm somewhat squeamish, I think, about entering into these financial arrangements, and I think if we're going to go into them, I'm with Dan. I think half-hearted measures, if you're really going to say this is what we have to do in order to increase the supply and we're willing to ride roughshod over these other things, then let's do it in a way in which in fact is going to succeed rather than step by step, first with the funeral expenses, then – but I'm very nervous about taking that next step and would like very much to try to find some way get Bill May out on the stump, to make the kind of very deep and profound appeal that he makes. Michael? PROF. SANDEL: Well, I'm still trying to recover from Bill's dazzling comments and I haven't fully absorbed them, but I would like to draw upon what I understand of them and some of the other comments to offer a policy proposal that incorporates elements of Dan's suggestions and also of the moral sensibility that Bill just laid out for us. There are at least two reasons to oppose markets in organs. One of them has to do with coercion and coercing the poor. Dan brought this out. And Bill when he said that we shouldn't solve the problem of the desperately ill by creating a problem for the desperately poor. That's one objection to having markets in organs. Another objection which is independent of the coercion objection has to do with commodification as such with treating bodies as objections of possession as our own property, reasons that Leon has developed in the article that he wrote. The second, the commodification objection is independent of the first because whereas it's quite apart from rich and poor, about encouraging us to view our bodies as our own property, rather than as a gift with a certain telos connected with the sustenance of life. Now there is the hypocrisy problem in rejecting markets that Rebecca raised, but the hypocrisy problem can be solved in two directions. It can be solved by universalizing the practice of commodification or it can be solved in the other direction by decommodifying the practice of organ transplantation altogether. And I think there are reasons and ways to advance the second which is what I would propose. In the discussion paper, there were five proposals that were laid out and what I would propose would be a combination of numbers 5 and 3. Number 5 is the routine retrieval which – and Dan and Bill have both given us reasons to take that very seriously. The routine retrieval I would say not based on some theory of presumed consent, but to the contrary, as a way – and not only by the way for the sake of increasing the supply, although it would have that desirable effect, but also as a way of giving expression to the moral sensibility that Bill articulated. That's the reason even beyond the reason of increasing the supply to favor routine retrieval, so that there's a presumption built into the practice that the body isn't our property as individuals. Now I would make this routine retrieval subject to religious exemption, so that those who had religious convictions that saw the body as somehow necessary to the afterlife, allow a kind of conscientious objection provision so that those people wouldn't be subject or they could opt out. But beyond that, there would be a presumption and expectation and then couple that with proposal 3, the public compensation, not compensation in money, but in kind. And what would count as compensation in kind for enacting the presumption that our bodies are now our property, but rather gifts of life that are in our care for a time, not just funeral expenses, certainly not a tax credit for the reasons that Bill explained, and not discounted health insurance either which is subject to the perplexities and anomalies Bill played out very well about when – should the discount be reduced when the kidney diminishes in its value? No, the proper compensation in kind would be universal health insurance and universal health insurance, not just for the familiar public policy reasons that there are people in need who aren't cared for, but as a way of giving expression to the same ethic and Bill elaborated on this, the same ethic that underlies the routine retrieval part, namely, that if our bodies are not our own property as individuals, but a gift of life that is for a time in our care, then it follows that when our bodies fail us, when we fall into ill health or disease, that isn't our responsibility as individuals either, but a shared common responsibility. So the ethic that underwrites the presumption of routine retrieval is also an ethic that supports compensation in kind, not in a discount, not in funeral costs, but in universal health care. And while we're at it, once we have that we can solve Rebecca's problem of the transplant surgeons making a whole lot of money on this because there will be a single payor who can set fair rates. CHAIRMAN KASS: Very eloquently done. The hour is late. DR. KRAUTHAMMER: Can I make a short comment? It's a lovely idea, but it means that we will be postponing the issue of organ shortages for a very long time because the prospects of that kind of proposal succeeding are very small right now and I think there might be less radical and dramatic and universal ways of approaching it. I think it's a very fine idea. I just think in terms of practical politics, it is impractical right now and it would postpone the solution or at least an approach to the transplant problem. Also, if I could just open for discussion for another time the – I wonder if there are people here who could tell us a little bit about the history of the routinization of autopsy because I see autopsy as sort of the model for the violation of the body. I don't know what the laws are to date in different States on whether it's routine, whether there's opting in or opting out, but I'd be interested. I think that could inform our discussion of this issue to see how the initial violation of the body, if you will, was routinized and accepted and how it's regulated today. I think it might give us a few insights into this issue. PROF. MEILAENDER: Let me just comment on that real quickly because autopsies which were fundamental in understanding modern medicine essentially are not done any more. And the reason they're not done anymore is because nobody will pay for them except in criminal situations. For example, the American Board of Internal Medicine requires that you can't have a training program unless there are at least 10 or 15 percent autopsies done on the people who die and many centers cannot do this any more because the pathologist does not get paid for it. So if you look all over the country, autopsies from the standpoint of science alone, it's a great tragedy that we can't find the mistakes and so forth that we do. So we struggle to get autopsies and namely make it now because of legal requirements for unexplained deaths or quick deaths that occur. It's gone away. CHAIRMAN KASS: The hour is late. Let me make – let me see if I correctly get the sense of this group. This is obviously – this is our first crack at this topic, very, very fine and rich things were said. We have a lot on our plate in terms of what we've agreed to do or been asked to do, but unless I hear to the contrary, I will assume that this is a topic that can remain alive for us to be revisited in meetings ahead. We can get additional information as to what the Secretary's committee has done and we can send out some additional materials and find some additional information. But if this Council could think its way towards some kind of policy recommendation, if it was so inclined, that might be a useful thing, and at the very least, we can keep this issue from being reduced, simply to the question of supply which I think has been the brunt of the remarks all around the table. We're adjourned until 2 o'clock. It's about an hour and 20 minutes, rather than what we should have had, but that should be enough. SESSION 3: BEYOND THERAPY: BIOTECHNOLOGY AND THE PURSUIT OF HUMAN IMPROVEMENT
CHAIRMAN KASS: I think we're all here except for Frank who's coming back from a Dean's meeting as soon as he can. This afternoon we come to our topic on "Beyond Therapy," sometimes known as our topic on enhancement. We have two sessions. The first, sort of general reflections and the second, the taking up of a particular case study, the ethical aspects of sex control. Council members will have seen this paper/lecture, more a lecture than a finished paper, that is intended as a discussion paper to continue the conversations that we've had a couple of times, most recently the very excellent conversations stimulated by Michael Sandel's wonderful discussion paper. I don't want to say very much. The lacunae in the paper and the notes that are invitations to the author for further development are there, and the limitations, I think, are clear. I do think I would call attention, I guess, to three things of some importance, namely the three parts at the end. One, the discussion of our attitude with respect to these Beyond Therapeutic interventions, what I call the attitude of mastery, and it's in that place where we explore several things and try to discuss some things that were in Michael's paper. Then sections on possibly questionable means and then some discussion of the desirability of the ends, either the end of indefinite agelessness of body or the pursuit of a certain understanding of happy souls, part of which I argue, in fact, is not happiness indeed. I would prefer it, I think, if the conversation focused on those last things, on the constructive, or the attempt to say what issues I think are somehow most important, rather than the ones that I've raised if only to set aside, though I would say only one thing in addition. By taking up this question mostly in terms of the choices of individuals, I think I've blundered. I mean, in some way, as Charles Krauthammer and Frank and others have argued in the past, it might very well be that the major worries we have about these technologies are not what you'd say to the individual case, but only when you see these things in the aggregate. I have, for my own reasons, tried to argue the moral case in the individual case, but the questions of liberty and its constraint through technologies that what go to work on others, and the Ritalin case that we took up last time is a perfectly good example, means that to do this paper properly, the things that have been set aside for the purposes of this analysis would have to be brought in and emphasized. But with that apologian introduction I would like to ask, and Michael has kindly agreed, to ask Michael to serve as Chair of this discussion and try to guide it, just so that I won't have to try to keep order and also attend to the – what I trust will be the interesting criticisms and comments. So thank you Michael. PROF. SANDEL: The floor is open. Gil? PROF. MEILAENDER: Leon, let me start with – I may have some other sorts of questions later, but let me start with some questions that do not necessarily reflect my considerable sympathy with where the paper's going, but would just ask some questions to maybe get you to expand a little more on the way you discuss the loss of agency in the use of some of these techniques and the importance of that. Let me just ask three questions about that general issue. It comes up in pages 14 and 15 in the paper where you – I guess it's in the "Means" section and you move beyond some kind of simple, natural-artificial thing to try to get at what more deeply is going on and the issue of passivity and playing no role and so forth. The three questions would be these. What if it makes us happier? If the use of one or another of these techniques makes us happier, and I don't just want you to tell me that better to be Socrates dissatisfied. What I mean is, what if in some sense, you know, if you think back to the stuff we read about Prozac, for instance, and so forth. What if in some sense I think I've really gotten a little more to myself here, this is something more to the real me. What do you say about that? Then the second matter, what if – what if we really do choose this? In what sense are we not exercising agency? You want to say that we're not while, at the same time acknowledging that the law might well hold us responsible in certain cases and seem to back into the law being a fiction at that point. I wonder if you might want to say a little more about that. Then a third question, maybe not – doesn't go quite so directly out of anything you say in the paper, but with respect to germ line alterations done before I had any agency, how does the agency analysis that you give deal with that? I mean, any agency that I have is built on whatever those alterations might be, so I don't quite see how that analysis works. Those would be sort of just for starters, three questions about what I think is a fairly important move in your argument there. CHAIRMAN KASS: No, those are very welcome – and good questions. Let me change the first one slightly. I don't think it affects the point. What if the use of these means doesn't necessarily make us happier, but makes us, in fact, more able to function in the ways in which in the last section of the paper, or even here I'm claiming are somehow essential to our flourishing. I do give some examples of things which are non-therapeutic, which one would, I think, countenance. The use of agents to keep pianists' hands from sweating, or a neurosurgeon's hands from trembling, or let me make it even stronger. What if it really is the case that part of the reason that one is frustrated or unhappy or incapable, in fact, of pursuing one's own activity is that there really is some kind of wiring or chemical problem in the brain. Why not treat this as in some way the restoration of some kind of wholeness of equipment so that – now that's not exactly your question, but with respect to the way I've reformulated it, I'd have to say I'd have a hard time making the case against it. In other words, the fact that something is non-therapeutic doesn't seem to me necessarily a violation of this in the genuineness of our activities; that there are certain kinds of things that we would take that would be aids to our functioning well, humanly speaking. Even if they were means to which we were passive and in some ways functioned in us magically without our really understanding how they proceeded. You're smiling so I should let you interrupt. PROF. MEILAENDER: Well, I just want to – I wonder, and I may be missing something here, but if we could stick a little more with my un-reformulated question. You distinguish between a sort of mood that might be humanly intelligible. I have joy at the arrival of a loved one, say. You distinguish between that, which you call humanly intelligible and the mood that isn't so intelligible. I just have joy because I've been programmed to have it, and I guess I still want to ask – See, what's so bad about having joy? Is there somewhere back in the kind of underpinnings of your view the sense that really I ought to feel a little alienated in some way in the universe, or just if you can just expand. CHAIRMAN KASS: Unlike our visitors on the Prozac discussion, I'm not a friend of deliberate alienation. There's plenty of it in the world, thank you very much, without having to go cultivating it. No, I guess the argument is that leaving aside the very real possibility that the basis of our moods are not only determined by fit responses to the things we encounter, but in fact might be determined by the intactness or fitness of our equipment unbeknownst to us. I mean, some people are in fact given a good gift by nature, and then there's Eeyore and I think if one could do something for Eeyore I wouldn't be averse to doing it. But having said that, it does seem to me that on the whole, we think – we'd like to think that our feeling states are somehow related to either our own activities or our own relations to the world; that we feel joy – I mean, if somebody is medicated to, you know, feel joy at the World Trade Center disaster, you'd say something is grotesque, and therefore there's a certain sense of the fitness between the way we feel and the things of our experience without being doctrinaire about it and without saying, `I know in all cases what the fitting response is.' There's room for a lot of variation, but it does seem to me that to begin to deal with the feeling state and the general mood state in a way that is somehow unrelated to the events of one's life is to sacrifice something of what it means to be in relation, properly responsive to, appreciating and feeling in the world and in relation to other people. I think there's a lot of ambiguity there, I mean, I – PROF. MEILAENDER: Just one more. I don't want to occupy too much time, but isn't – if you think of sort of completely pre-pharmacological era possibilities, isn't in a certain sense a description of certain philosophical attitudes toward life precisely that? Doesn't the stoic, for instance, want to develop a certain kind of, in this case it's really a kind of an almost non-emotional response, regardless of what the events of life are? CHAIRMAN KASS: That's a nice point, though. I guess I would say that that's not so much an attempt to produce a kind of apathy regardless of the events of life, but it's an attempt to somehow bring one's feelings into an alliance with what they take to be the deeper truth about life, which is to say that the only things which – There are things which are in our power, and there are things which are not in our power, and there's absolutely no point, I think, in somehow wasting one's psychic energy on the things which are not in our power. It's not a philosophical view to which I'm attracted, but I think they would claim that's precisely an attempt to move one's self in a fitting direction, they just don't see the world in the same way that other people do. Very quickly on the other two points, what I meant by saying that, you know, someone who loads themselves up with medication and ceases to be in their right mind – and we don't have to go to drugs, we could start with alcohol – is somehow responsible for all of the things that happen as a result for having put themselves in that condition, but when people wake up the morning after, they say, "Gee, that wasn't me." That people behave not in their right minds, or that there's somehow a transformation of who they are, and what happens to them is unbeknownst to them. Now, if you've done it enough times, I suppose – and you're one of these people who sits on your own shoulder and watches yourself undergoing these experiences, you can say, "Oh yes, I'm beginning to feel high now, and my speech is getting a little slurred, and now I can't really tell the difference between my friends and my enemies." But for the most part, people lose themselves as a result of some of these agents, and that's partly what I meant by saying one puts one's self in the condition where one allows things to happen which are unintelligible, and that there is – I mean, granting there are occasions for joyous drink and all of that, but as a chronic diet, it would seem to me that one would have surrendered who one was to these things that work on you. Now, the last question about germ alteration, I would also want to enlarge, because it makes trouble for the point of view that I'm taking here. In a certain way, the equipment with which we start in life is magically given to us. Right? I mean, we didn't choose it, we don't really understand when we're born the fact that we have sensation or what it means that we see, that we smell. All these things are somehow part of the given-ness of things. As was pointed out, actually, by some staff response to this, the given-ness would be a matter of indifference, whether it was given to us by nature, by God or by genetic engineers. We would acquire a kind of equipment to start with which we would then exercise, and in a way without really understanding what we're doing. That is, my paper abstracts altogether from the kind of – much of the mysteriousness of human experience, and seems to talk more about its intelligibility and that we somehow can figure out what we're doing. I think that's a deficiency. The only reason I think I'd stay with that is because I do think that, whether you believe it's evolution or whether you believe it's divine plan or nature, something like that, there is a way in which most of the ways in which we encounter ourselves and encounter the world around us and fellow human beings, the means and the ends that we pursue are to a greater or lesser extent accessible to us, granting that the original equipment might be mysterious. To surrender even more of that to forces that just work on us and that we don't understand is, I think, to lose at least a partial grip on the kind of life that nature or God has given us. That's, I think – So, I mean, the more I work on this the harder it is to simply say there's a line here, but I do think that the disruption of activity, the disruption of normal activity is, I think, an important aspect of what it is to worry about here. PROF. SANDEL: Thank you. Paul, welcome. DR. MCHUGH: Thank you very much. I had a number of things I wanted to say, and perhaps will go on too long, so you must cut me off, Michael. I found this article, along with Michael's article before, very fascinating, important. I have great sympathy for it, and then I get very discouraged. I get discouraged, not because I disagree with any of these things, but I'm concerned that we're talking about a growing break between the higher culture and the common culture in our world. That's affecting medicine as well as everything else. I went over this article very carefully and saw at least seven points that you were talking about. I only want to talk about a few of them. In relationship to our hopes that the things which are common in our culture, the good can be lifted and made even higher by their expression. To some extent in reading your article, Leon, I looked for examples of what are the problems seen here, and the problems that come from this issue of enhancement. It led me back to those things that are – in which the higher culture and the common culture interlock happily. I'd like to draw a few examples of people, I think, that we recognize take from the common culture but make it higher. The two that I want to remind you of are Cal Ripken and Frank Sinatra. Cal Ripken is different from Pete Rose, and Frank Sinatra is different from Elvis Presley. Why is that? We'll start with Sinatra first. For Sinatra, Sinatra showed us – Sinatra's part of the common world, part of the common culture. He sings common songs, but he shows us what those wonderful music can be, and that's why we love him. It's not just that Bobby Soxers screamed about him. I mean, I'm not a Bobby Soxer and I still listen to Sinatra. Why do I do that? I do it because he makes us aware just what the music can do. Elvis on the other hand, the music was to make Elvis. That's why people say Elvis isn't dead, because he's an icon, okay? Elvis lives because – Sinatra is dead because he's a human and made music what it could be. Elvis is alive because he's an icon and tried to make music make him. You don't sing many Elvis songs. You know, it's the same thing. You could go on in the music area. Louis Armstrong versus the Rolling Stones, Ella Fitzgerald versus the Supremes. I mean, it's all the same. Why do we love them? They make the higher culture from the common culture. The same thing in baseball. What a wonderful game, and Michael and I spend perhaps much too much time thinking about it. But it's the same thing with Cal Ripken versus Pete Rose. It was interesting, wasn't it, and problematic at the World Series that although the American people, the majority said that the greatest achievement was Ripken's achievement, the people cheered loudest when Pete Rose was out there. I suppose I can understand that. But the thing about Ripken that I want – the little story about Ripken I want to tell you about. I shared it with Michael, but it's so telling, and it came when Ripken's stretch of games had come to exactly the point where it matched Lou Gehrig's. People came to Ripken, lots of them, and said, "Cal. Stop now. The record is yours with Gehrig and that's enough." Ripken, you know, and to some extent you can see the sympathy of that. I mean, the fact that Lou Gehrig had to stop because he had amyotrophic lateral sclerosis. He stopped because disease stopped him in his tracks. Ripken was going strong and could have celebrated, in a sense, that. But he said, no, that would be very wrong. That would imply that I did this to reach this record. This record was the outcome of my desire to play major league baseball – play baseball at the major league level every day. That's what it was about. I don't care about this record. I want to play every day. Showing us that the game is not there to glorify me. I'm here to show what can be done with the game, okay? Now, the same thing now applies – Rose is another, for him, he could gamble, he could do anything, he could debase the game for his purposes, for all that he was – The game was for him and to make him what he is. I can go on a little further. Medicine is intended to help us overcome an illness and to be what we are intended to be. To use it in another way is to take what we've discovered and misuse it. But I'm not sure I could persuade anybody of this, because this is talking about, you know, the higher culture, and we live most of the time in the common culture. We need to be sure that we're telling people what they're losing, because the higher culture ultimately is to bring us on – we might have to give something up to be in the higher culture, but it makes up for it in all kinds of ways. The higher culture really tells us what can be done, and I'm quite worried that people aren't going to hear that, even as they hear what you have pointed out, things like family despotism at the expense of childhood, conformity and courage, the break with nature, the non-environmentalist aspect of this intrusion, the hostility towards replacement and ultimately, therefore, the hostility towards little children themselves, that we see everywhere. We still see it. You know, you can't fly on an airplane with a crying child without the person sitting next to you squawk and holler, and I remind them that's Social Security, buddy. I mean, they're the people that's going to be working when I'm not. (Laughter.) DR. MCHUGH: They always say, "Well, I hadn't thought of that." I say, right, you know, they're going to be working so for God's sakes, put up with their crying. I think I'm rambling a bit here, but just recently, for example, in relationship even to our other enterprises, look, we're at war now, and it's a terrible war, but now a couple of our pilots were given amphetamines to let them be more strong in some way, and they probably killed those – it may well have led to their killing the Canadian soldiers, which was extremely sad. So, I end by saying I read both of the things you say, but this theme that maybe we're talking and could accept what was individual, then we begin to get disturbed when it becomes practice. I think that's another expression of the fact that we lose in the higher culture when the common culture is not inspired. CHAIRMAN KASS: Paul, thank you very much. You provide a much larger context. Whether people agree with you in the details of the choices is beside the point, is to recognize that to talk about this subject without paying attention to the larger cultural context is a mistake. However, I think one should take some heart, for example, in let's say the concern about the steroid use in athletics. If one thought, and by the way it's somewhat surprising, because on the one hand one could say that there is a common over-emphasis on the mere achievement, regardless of how it's achieved. There are certain tendencies in the culture, not only in sports but all kinds of places, where the accomplishment separate from the activity is all that matters. Granted. Yet, lots of people are, in effect, bothered by the use. Maybe it's because, as Charles says, these people are cheating or that it's somehow unfair. But there's also the sense that, you know, this isn't quite the same activity, or may not be the same activity. Sport, in fact, if I thought it wouldn't somehow embarrass us here to be giving more time to that topic, its seeming to be too trivial for our work, it would seem to me it would be a very good example, because that's one of the places in the culture where there really is a respect for genuine excellence and where you can often tell which it is, and not just by who wins, not only, and where there is a link between what's common and what's excellent. On the one hand, the athletic heroes that one admires most seem to do things that are just superhuman. At the same time, they're doing the things that the rest of us can do slightly, if badly, and therefore we understand that there's a continuity between what is ordinary and what is extremely fine in the performance of ordinary things. So, and I think that there's a certain way in which even the people who play sports in an ordinary way somehow understand that the pleasure of it is in the activity, and is in somehow the pursuit of some kind of excellence, and I wouldn't say that we're simply corrupt on this altogether. The question is whether or not one can take advantage of those kinds of sentiments and, in a certain sense, some kind of worry that the ultimate uses of these technologies will be degrading in the sense that activity will be distorted and excellence will be lost. That's just part of this. DR. MCHUGH: Well, I agree with that, and agree strongly. I happen to think that sport is a very important part of human life, because it's a place where you can see human challenge without bloodshed. It's the issue of you can see the hero and the emerging of human possibility in an arena that costs, ultimately, if you like certain games, costs people no injury, and therefore can show human capacity in this way. I agree with you on the steroids very much, and it's discouraging. Although, you know, there's something to be said for the fact that there is a bit of turn-off about the home runs, for example, in baseball, you know, the old line, if you think it's a hopped-up ball, you haven't looked at the hopped-up ball players. I mean, here we have a record of 60 home runs that lasted for multiple decades, and then suddenly we smash it again and again and again, and there's something, you know, very suspicious here. It takes away from that, and so I think that – I very much want to use the model and imagery and symbolism of sport to talk to other people about the way we live other aspects of our life and see our excellence there and how we are cheating. I agree completely with Charles that it's cheating to have these guys bulk themselves up. PROF. SANDEL: Okay. There are a few people waiting, but I want to see if just on this thread, Janet, was yours on this thread? DR. ROWLEY: Mine was on that thread. PROF. SANDEL: Go ahead. DR. ROWLEY: I guess the concern I have with the emphasis on the steroids is that my own assessment of academic, really, superior playing is that it's more than just strength. So it's really coordination. You know, an outstanding tennis player, a Michael Jordan, for example – and I don't know whether he's an appropriate example or not, but coming from Chicago it's important that I at least mention him – that sports, ice skating, hockey, these do require strength, and if you don't have it you're at a substantial disadvantage, but that doesn't make you an outstanding player. It's coordination and other aspects. A lot of it is skill and practice. So you just don't get it from the bottle, and so I'm concerned that we, in the focus on the steroids, we don't lose sight of the fact that there's a great deal of human values and skills still present in this. PROF. SANDEL: I wonder if before calling on the others, just following on Janet's point, Leon, that I could just ask you about two specific examples that you mentioned in your paper. I wasn't clear what you thought about them. Drugs to steady the hand of a neurosurgeon, or to prevent sweaty palms in a concert pianist cannot be regarded as cheating, but they are not the source of the excellent activity or achievement. They may not be cheating, but are those objectionable, or they're okay? CHAIRMAN KASS: Well, if I'm forced to say objectionable or okay I'm going to say okay. I'm not sure that the things should be – PROF. SANDEL: Well, the reason I ask is do they violate the norm that you emphasize about human activity – intelligible and transparent and working with one's initial equipment and not being mysterious and magical and passive. CHAIRMAN KASS: No, I partly said that – I don't have the place exactly, page what? PROF. SANDEL: Thirteen. CHAIRMAN KASS: These are side matters that somehow get in the way of the fundamental character of the activity. It's not somehow intrinsic to being a neurosurgeon that you've got shaky hands or that a pianist would necessarily sweat. These are things which are adventitious. They occur in some individuals, and here's an opportunity, in fact, to blunt the noise and let the activity flourish. I don't think one has fundamentally altered the activity that one has engaged in, or the satisfaction that comes from it just because one has blocked out these distractions or these things which get in the way. PROF. SANDEL: So the shaky hand of the surgeon is a distraction. What about a drug not to steady the shaky hand, but to make the hand somewhat more dexterous? CHAIRMAN KASS: Well, this, I mean, here Janet's admonition is somehow valuable, that almost all of these activities that we value are not unidimensional. They're not just the function of body parts. There's the question of desire and attention and if we're going to do a kind of analysis of all of these things and find out, well, there's this piece which you could enhance slightly and you can take me to the next one, and before you know it I've given away the entire activity and we've got some kind of – the equivalent of some kind of little demon who's inside of me who's doing this. At some point maybe I'll say, you know, I've gone too far with this agreement, but let me concede that there will be a whole series of such intermediate cases that I'm going to be able to justify and say you haven't yet, somehow, corrupted or perverted the activity or taken it away from the agent whose activity it is. But I think you'll cross the twilight and at a certain point you're going to be in darkness, and it will be a very different kind of thing. This is not an area, I think all of us would agree this is not an area that comes with bright lines and "thou shalt's" and "thou shalt not's" and "this is degrading" and "that's improving." A casuistry is needed, and yet if this paper has any value in it, at least it would be to call attention to the kind of thing about which we should be thinking when we think about the continuity of the continuum. PROF. SANDEL: Right. Just on this issue of the continuum or the range of examples, Charles, is it on that? DR. KRAUTHAMMER: Yes, it is, if I could just pick up. In the example that Michael brought up, it seemed that to me the distinction between the steadying of the shaking hands and the increase in dexterity would be a distinction between what you might want to call therapy on the one hand and enhancement on the other; suppressing a defect as opposed to creating a capacity. Now, what was most interesting to me in your paper was your rejection of that notion, that bright line between distinguishing between therapy and enhancement, and you pointed out all of the difficulties in doing it. But I wonder, since intuitively we might say, keeping the surgeon's hand from shaking, that sounds okay. Making a surgeon of Rank A into a surgeon of Rank A+ with a drug, that sounds a little bit like what we're deploring. It would seem to me that the reason that we intuitively say yes to A and no to B is that one is what we would think of as therapy, correcting a defect, and the other is enhancement, creating something new. It seems to me that if you take away that notion of the distinction between therapy and enhancement, between disease on the one hand and sort of superhumanity on the other, you have kind of disarmed yourself intellectually in this discussion. I'm not sure you could carry it through without that distinction, given all of its problems. PROF. SANDEL: Do you want to take that on now or after you hear some other? CHAIRMAN KASS: Let's go with some more. PROF. SANDEL: Okay. Robby? PROF. GEORGE: While I'm having trouble resisting just getting involved in the casuistry with you guys, but let me see if I can force myself, too, to raise the point that I had actually raised my hand about. Although it will take us away, Michael, I was going to raise a completely different and a lot mushier issue, so if you want – PROF. SANDEL: All right, well is there anyone else who wants to pitch in on the casuistry? Go ahead, then. PROF. GEORGE: Okay. Leon, as I was reading sections three and four of the paper, an issue occupied my mind that's completely different from anything we've raised heretofore on the Council, but I wonder if you've given it any thought and if you have anything to say about it. As I say, it's somewhat mushy. It's this. There seem to be some values and virtues, and perhaps what even might be called attitudes, that individual people, or at least families or units of society, as distinct from the larger society as a whole, are capable of understanding, seeing the point of, practicing, even if sometimes with difficulty. Virtues and values aren't always easy to live up to or to exercise, in the case of virtues. But there seem to be other values and virtues, and I should think attitudes, and perhaps the attitudes that you're commending, sometimes, as the opposites of those that should be rejected, like the attitude we take when we regard our lives and aspects of our lives as gifts, which it's extremely difficult for an individual or even families to get hold of, to understand, to see the point of and to practice in the absence of a larger culture which formally through its institutions and informally through its public opinion and habits and so forth, is supporting. The example that I'll borrow – I hope it's useful – I borrow from Joseph Raz, the Oxford legal philosopher who talked about this issue in his 1986 book, which was called The Morality of Freedom. His example was monogamous marriage. He said monogamous marriage, assuming for the sake of argument that it's the uniquely valuable form of marriage; that it's the morally best and right form of marriage, Raz says that monogamous marriage can't be practiced by an individual or by individual couples. No, he says, rather, it requires a larger cultural structure that supports it through its public laws and policies and even more importantly, perhaps, by its informal attitudes. Now, I take Raz to mean there not that a society that does not value and practice a widely practice monogamy, it would be impossible for a man to confine himself to a single wife, or a wife to a single husband. It doesn't mean that. Obviously, that would be possible. He's not supposing that it would be made against the law to take only one spouse. I think what he means is that individuals would just have an extremely difficult time working from scratch seeing the point and value of monogamous marriage in the absence of a culture that gives them a sense of that value and of the virtues associated with it and needed for it to flourish. If you're trying to just reinvent the wheel – it's not as if you can't actually construct a pretty rigorous argument in Aristotelian fashion, perhaps, for monogamous marriage, but it will simply seem a kind of sterile argument, a kind of casuistry that people will, whether they can find some logical flaw in it or not, not really be able to make use of in getting a grip on this good, valuable thing. In reading parts three and four of the paper, I was thinking, you know, the attitude that you're here holding up, and the attitude that Michael held up in his paper at the last meeting, might be just that sort of thing, that this is not a matter really of individual choice exclusively, but the kind of thing that's inherently a gift. The attitude itself, a gift, made possible, not made certain, but made possible by a culture that provides the resources for it by that kind of formal and informal support. CHAIRMAN KASS: This is a continuation of Paul's comment in, not speaking about the higher and common culture, but speaking about the world understanding of the culture as a whole. I think one of the – although I found that Michael's analysis, though welcome, thought it didn't go far enough. He did go in a way to the extent to which these more philosophical questions of goals and means can be dealt with at all, it might only be possible if one has a culture that shares a certain kind of attitude with respect, for example, to the issue of appreciating and savoring as opposed to trying to master and the like, which is why I think beginning with attitude is not just to be set aside, but there's something primary about that. Michael, at the end of his little paper, hinted that the roots of this matter might, in fact, be with a certain turn in Western thought, both about the nature of nature and about what our attitude toward it should be, and that perhaps we need to rethink that. I wish him lots of luck. I would like to do it too, and to do it without sacrificing all the great benefits that all of us have as a result of this turn. But, no, I think you're absolutely right, and there are lots of things in the culture that stand in the way of getting to these kinds of questions, even if one wanted, even if one could do it intellectually. On the other hand, and I really do mean this, I do think that when people look at some of these biotechnological developments and the world that they might be producing for our descendants, yes, some people are worried about the ethics of the means and the questions of the sanctity of embryonic life, but some of them are really worried about the question of what would human activity be like and what would human institutions be like. The power of the novel like Brave New World is that it at least – it evokes those kinds, still evokes those kinds of concerns. So, I'm, at least for myself, not willing to turn my back on this culture and declare it as being incapable of resonating to these sorts of things, because I sense the people's worries about those matters. I mean, sure, there are prophets who say, look, the post-human future will be wonderful, we should go there. Evolution has in fact made it possible for us to take the reins of our own destiny and to produce something better than human beings. But I think that the people as a whole are concerned about this, and public bioethics has yet, I think, to give voice to that concern. That's part of the justification for working at this difficult project, because I do think it touches some of the really deepest questions. What kind of a world will these technologies produce if they were allowed to develop in their own way? PROF. GEORGE: A brief follow-up Michael? PROF. SANDEL: Yes, go ahead. PROF. GEORGE: Leon, I certainly agree with that. I wonder if the strong libertarian streak that we Americans do pride ourselves on and which has served us very well in very many respects, and which foreigners often comment on, does provide, though, a particular challenge to seeing the problem, because we're always tempted to believe that we can solve these things, handle these issues as a matter of individual choice and sometimes, then, fail to see the respects in which they are inherently and profoundly social. Still matters of choice, there's still choosing that needs to be done, but social and not entirely individual. PROF. SANDEL: While we're still in – I have Bill and Frank waiting and then Gil on the issue of shaping attitudes and the moral culture. Were there people who wanted to speak to that before we moved on to others? Was yours on that, Gil? No. Okay, in that case, Frank and then Bill. Oh, Bill, I'm sorry. DR. MAY: Well, several comments now. First, you give us directly the quote from Montaigne, "The Hymn to Aging," and the benefits of that, "led by nature's hand down a gentle and virtually imperceptible slope towards the grave." You quoted this at an earlier meeting, and I'll repeat a comment I think I made at that point. There's certainly a truth to that, but I guess I've had more powerful sense of readiness for the grave with a sense of work completed. I'm acutely unready for it when that book is not yet written or almost finished or something like that, and I think more generally in life people sense when they've got those children grown and they're no longer taking in water out in the harbor, but they're rolling along in the seas, a sense that their work is done. Yes, I suppose signs that the castle is crumbling also prepares us, but it's not the indispensable way that we are prepared for our mortality, it seems to me. That's the first point. The second relates to what Frank has said. I mean, there are stretches of this paper that is perfectly beautiful. The closing coda is a very beautiful paragraph indeed. Excuse me, Paul's comment about the distinction between the high culture and the common culture, the low culture, and one begins to wonder whether we're talking about stuff that is susceptible to policy-making and legislating or we're talking about things where the appropriate mode of relationship is education. I'm a little bit hesitant about the distinction high and low, because its fineness and crudeness or sensitivity that doesn't necessarily relate to what we think of when we talk about high and low. Last comment you offer is on a very previous – and appreciative conversation with Michael Sandel on the question of mastery and giftedness. I simply would be very interested in hearing from our temporary Chair what his response might be to those sections of your paper that refer to Michael Sandel's comments. CHAIRMAN KASS: Could I do something quickly on the first and then? I'm very eager to hear, also, I'll only deal with the first comment. It's very interesting, it was interesting when we had our people on aging research present at the last meeting. I had occasion with Dr. Austad over dinner to pursue the question with him further. The degree to which they regard life sort of like a time line having no shape, but you could add increments to it as if it had no form of its own; that it was either going to be more of it or less of it or a lot more of it, or something like that. What I was in a way arguing for here, are a number of things, that to really think that – to take seriously finitude not as just a curse, but as – and none of us will ever know exactly in advance what the shape will be like, and I certainly don't want to romanticize the end of life the way many people now have to go through it. That should be said. But to perceive one's life as time, the extension of which is to be regarded homogenously, as if it were just a variable in physics, rather than to see it as part of something that has a shape and a trajectory and a form, I think, is a kind of distortion of what the truth about things is. Partly in the quotation from Montaigne, one does begin to see, you know, as my friend Joseph Epstein said, "I look in the mirror and I say to myself, where did I ever get such a turkey neck?" You know, and he's beginning to see that there are certain kinds of intimations. That's not the whole story. The other thing has to do with the perception of time future, and whether or not you think that there is always going to be tomorrow, which one is going to be encouraged to do if there are no intimations that things are slowing down, then it seems to me one also misperceives the shape of a life and may not even have the same kind of attitude toward having a project, finding something to complete, having a family, doing these various kinds of things that are somehow tied to the trajectory of a life. So I didn't want the Montaigne thing to stand alone. I think one wants to talk about both readiness for finitude, as well as the perception and uses of time in the early part of life, which is a lot – we'd look upon it very differently if you thought it was extendable indefinitely, than if you thought you were on the way up, or that you were at your peak, or that you were now part of the generation that was supposed to make way. Michael, please? PROF. SANDEL: My response to Leon's response. As I understand it, Leon's reply on the point about mastery, leaning against mastery and cultivating and appreciation of giftedness. As I take it, Leon accepts the critique of a certain Promethean aspiration to mastery, but goes on to make the point that simply to assert as the rival norm giftedness or an appreciation for the given is indeterminate. It's indeterminate in the sense that it doesn't tell us by itself which things can be fiddled with and which should be left inviolable. He gives the example of smallpox being among the things that are given, and simply because it's given doesn't mean we should acquiesce in it and not intervene to confront it or even to eradicate it. I certainly agree with that. I agree that the notion of giftedness or restraining the drive to mastery is indeterminate in the sense that it doesn't by itself specify what things we should try to alter and what things we should stand back and simply appreciate or savor. Though I'm not sure that any norms at this level of abstraction, no norm in this range would be determinate, I think. But then the question arises, well, then, how do we go about deciding. Here I think I would agree with Leon, that we have to assess the worthiness of the ends, the goodness or badness of the givens that we step back to contemplate or to reflect on, possibly to appreciate, maybe to try to eradicate. So then the question is, well, all right, if we agreed that we have to reflect on the goodness of the gifts, not all gifts are ones that we would want to simply affirm or leave in place, what's the source of those moral judgments? I agree the source can't just be an invocation of the idea of the gift. I think there is a certain conception of a good life for a human being implicit in the general account. It's one that Bill May brought out last time when he was giving what I took as a sympathetic elaboration that there's a tension between the molding and beholding, Bill's language, between the shaping, the intervening and the savoring, and it seems to me the account of the good life that this gestures toward is one that says we have to hold in tension these two stances toward the natural world and toward ourselves. It's not easy to hold them in tension, especially when we live in a culture where the drive to mastery is so predominant that it crowds out the other sorts of attitudes and appreciations. So there is a kind of norm there. It's a norm of a certain kind of life, a certain kind of goof life. It's not, though, one just specified in those general ways that will help us say, well, what should we alter and what should we accept. But here I think we have to look case by case. Here's where I don't think we can expect a global answer. So, for example, we could look at smallpox, and we have to investigate whether smallpox, despite the great damage it does to human life, is there some, nonetheless some very important end that we should respect in preserving it, and if there isn't then we should eradicate it. We have to have a local examination of each case. When we come to sex selection, we have to say, well, here's a case where the drive to mastery seems to be getting the better of us, but is there some important human end that's served by specifying the sex of our children. If we can't give a good answer to that question, then that would be a case where that would be a good reason to restrain the drive to mastery. Is some important, crucially important end served here? Whereas in pre-implantation genetic diagnosis to screen out dread diseases, there we might say, yes, some very important human end is served here. So we have to go case by case. There has to be, it seems to me, a local, particularized moral inquiry in order to make determinate this general account of where the culture seems to be going wrong in the drive toward mastery. I don't – and here I have some questions maybe for later about what I take to be the other account, the other normative account, Leon, in your paper, which emphasizes this kind of undivided, transparent, unmediated relation to one's own activity. Insofar as that's attractive, I don't know that it's more determinate than the other kind of standard, and I'm not sure I fully understand the moral weight of it, so I'd like to ask about that. But this, maybe we should put that off. I think we do have to assess the good of the given. I agree with that, but I don't think we can fully specify the good of the given just in general. I think we have to deliberate and engage in moral reasoning case by case with respect to each practice or given that we would alter. DR. MAY: May I add a word on the question of gift which you talked about. In my limited experience with actors and singers and so forth, I so often realize that there's really a double gift. One is the gift of the talent, and the second is the gift of the psyche to support it, and oftentimes you have an immensely talented person, but the psyche to support that, in performance particularly, and all the acute anxieties that can go with performance. Now you face an interesting problem with regard to range of normal and so forth. That person's psyche could cope with normal functioning in life. It's in the setting of the stage that there are demands upon it that they're not able to support. Now you've got an interesting problem. Do you offer medical treatment to sustain the psyche in this particular task, when in fact, in so many ways, the alternative would be to walk away from it? But in walking away from that second gift, the gift of the talent, then, yes, they can function, and it's within a range of normality, but there is also an enormous loss associated with that walking away from something that you've been given. It seems to me this is a range of complication in that discussion. PROF. SANDEL: Just on this, Paul? DR. MCHUGH: Just to finish off your comments, Bill. I just wanted to make the point that I didn't use the word "low culture." I used the word "common culture," and I'm in favor of common culture because we're a part of it. I want the higher culture to lift it, and my problem now with what we're talking about in the examples I gave to you is that I think that music deteriorates in the common culture into Elvis. Okay? I don't want to see medicine deteriorate into Dr. Feelgood with his shadowy cousin Dr. Kevorkian, because that's the way it will go. PROF. SANDEL: Frank? PROF. FUKUYAMA: Well, Leon, you mentioned that there's a whole social dimension to enhancement that you don't really deal with in the paper. I thought I might say a little bit about that, because actually, to me, that's in a way the most threatening aspect of enhancement. I think that it's actually an argument that you can present in a straightforward way that is fairly clear to people, although I really like the paper and I think the discussion it stimulated indicates how useful the paper is. But let me just lay out a framework for thinking about when you scale this up to the level of societies, what's wrong with enhancement. One obvious problem has to do with so-called positional goods, or goods that have to do with status, in which you're basically involved in a zero-sum game with other members of society where a gain for you is a loss for others and vice versa. Now it seems to me many potential objects of enhancement involve these kinds of zero-sum games. Height is a perfect example. Being of shorter than average stature, I know perfectly well that there are lots of disadvantages to that, and all sorts of opportunities that I haven't had that I would have had if I were, you know, six foot three. But that's not an absolute good. If I had been born in the year 1500, or you know if I had been born in Japan or some other place, that disadvantage wouldn't have accrued to me. Robert Frank actually, the economist Robert Frank has this wonderful book called Choosing the Right Pond, where he points out that actually many economic goods that we think of as absolute goods are in fact positional goods, or some of them are actually mixed, so that you may want that Masarati because even on a desert island you just love the look of the carburetors, but you know, many people also like the fact that their neighbor has a Jaguar and they can one-up them. So the motives are fairly complicated, but there is definitely going to be one class of enhancements that will be positional goods, and the typical solution to this kind of arms race situation is actually for a public authority to intervene and simply say, look, you just don't compete along this dimension because in the aggregate, although you can have individual winners and losers, in the aggregate nobody can win this kind of game. So that, I think, is fairly straightforward. A second category of issues has to do with public bads, or negative externalities, or, you know, we've dealt with this already. I would think that actually much of life extension falls in this category. It's of obvious benefit to an individual to have another ten years of life, even ten healthy years, but it seems to me, on the whole, it's not good for society as a whole. I mean, there are a number of reasons why this might be true. I think actually things like innovation, change, adaptation to new circumstances actually goes on generational cycles, and if you lengthen the length of generations, I mean, you wait for Franco or Castro to die or you wait for the Depression generation to get out of the way so that you can actually spend money instead of putting it in bank accounts. This sort of thing. I mean, all of these things slow down dramatically, which imposes a cost on society as a whole, even though every individual in the society would individually want that extra ten years of life. So I think that that's one appropriate way of thinking of that. Now, the final problem, I think, has to do with the problem of social control and social engineering where one group of people will attempt to use enhancement technology to shape the behavior of other members of the society. Now, and this has already come up in our discussion of Ritalin, which it seems to me, if Dr. Diller is right, that seven out of eight children being prescribed Ritalin actually don't have – aren't being prescribed it for therapeutic uses. Then in fact, most of the use of that drug is really as an agent of social control. This actually then gets back to I think the issues that you raise in your paper. What's wrong with social control? Well, the answer is nothing in itself. Parents try to socially control the behavior of their children. It's called education, socialization, so forth. You don't want them to grow up as criminals. You want them to put off short-term gratifications for long-term ends, and all of that. So we do that all the time. What is wrong with this class, this potential class of technologies that may permit new types of social control that we haven't seen? Here I think you end up bringing back a lot of the considerations that are in your paper that have to do with wholeness and integrity and in a certain way the complexity of a whole human being, because I would say that the biggest problem with most attempts at social control and social engineering are that they are based on an oversimplified model or understanding of human behavior that does not understand the complexities of human motivation, and therefore when they try to push on this one lever thinking they're going to solve one problem, it comes out somewhere else because they don't understand that actually all the levers are connected to one another. This, in fact, is actually one of the – would be part of – I asked you the other night. I was asking you what your answer would be to the Darwinian, you know, talking about giftedness and if you don't believe that God gave you all these characteristics as a gift, then presumably the other big alternative is that evolution gave it to you. You can say, well, if that's just a snapshot in evolutionary time what's so great about that gift and why do we have to defend it. I guess my answer to that question would be that actually evolution created a whole human being whose – and the interworking of the different parts make an adaptive sense that's extremely complex and that we don't perceive many times. So that, for example, many targets of enhancement like hatred, competitiveness, violent aggression, all sorts of propensities that we don't like actually are there for good evolutionary reasons, and they're linked to things that are very positive. We deplore our group-mindedness. We always divide human societies into insides and outsides, but if you think about it in evolutionary time, if we didn't do this, we wouldn't be the social species that we were, and it's very hard to separate the good aspects from the bad aspects. Some of those are simply unsolvable, I think, dilemmas of social organization. There's actually a lot of game theory that's quite interesting in this regard. There's this game in evolutionary game theory, hawk and dove, where you have a population of hawks that are predators and doves that are peaceful minded, so forth. It turns out that given – I mean, it depends on the starting behaviors of the populations, but the doves who cooperate but are very passive don't win, but the hawks don't win either because in a way both the hawkishness and the dovishness, when scaled up to a social level, have kind of off-setting advantages. So as the game is played, you actually get a mixed population of hawks and doves, and so both of those characteristics are actually adaptive in a certain sense. It seems many human characteristics are like that. What I see as the single most threatening thing about enhancement technology is that somebody is going to say, `Hey, great, we can change this particular obnoxious characteristic of human beings that we don't like.' If it's not totalitarian states doing it, it'll be some school district or some group of parents that gets it in their head that girls should be less feminine or boys should be some other way, or some other thing. Maybe it's just the opposite. Maybe in some point they'll want more feminine girls and more aggressive boys. Whatever, but it seems to me that it's almost inevitably the case that if, in fact, all of these human characteristics are bound up in these extremely complex wholes, where the good things are inevitably linked to the bad things, that virtually any intervention like this, using these new, more powerful technologies is almost always going to lead to unforeseen consequences. I really think that that's the issue of hubris, when people – it's not the hubris of the method bringing modern science to bear to try to achieve these ends, because we do that all the time through all of our other technology. It is the hubris of thinking that we understand this, you know, especially the interrelationship of human emotions into a whole human being, and that we understand how those interrelate and how the good emotions relate to the bad emotions well enough that we can intervene and manipulate to make people ultimately happier. So I guess that's my overall sense of the lay of the land on the social side of this, what's wrong with this stuff. PROF. SANDEL: Could I just make a comment to Frank, and Leon, you can feel free to react or to leave it till your full reaction. What you're doing in explaining what's wrong with enhancement essentially is translating all this talk about the moral objection, trying to locate the moral objection, to translate it into problems of social organization or evolutionary complexity. In a way, what you're – and maybe you're right, but you're making a radical suggestion that the whole moral inquiry is misplaced or misdirected. You are really, because all of the, as I listened, tell me if I'm wrong, as I listened to each of those four reasons to worry about enhancement, all of them – none of them has to do with identifying anything intrinsically morally objectionable in the enhancement. It all has to do with adverse effects on social organization or misunderstanding evolutionary complexity and therefore giving rise to unforeseen consequences. Do I have that right? CHAIRMAN KASS: Don't agree. Look, this goes back to an exchange that we had at the last meeting where you listed a number of things and, you know, deformed human life, it would do this, that and the – but where's the moral problem?
As if the moral problem was simply is it objectionable in itself, is it good or is it evil. Frank is talking about things that would transform the character of human life for the worse. I take that to be a moral comment, and not merely an operational one. It's not a moral objection in terms of thou shalt and thou shalt not. It's a moral objection in terms of the greater good and the lesser good, if I'm – PROF. GEORGE: Well, but I think Michael's entirely right to notice that lurking there in the background, behind the considerations that Frank raised is some judgment that Frank must have in his mind that enables us to distinguish the good from the bad or the greater good from the lesser good. It's the kind of thing that I think just has to be teased out. It's not that there's something wrong with Frank's analysis necessarily, it's just incomplete until we get to those considerations which are plainly there in the background, but are hovering in the background and naturally they interlock, you know, what are they. DR. KRAUTHAMMER: Or to put it another way, perhaps to harmonize it with your analysis, Leon, which is very individually based. I think what Frank is saying is that if you – it's rather difficult to see what's essentially wrong with enhancement in an individual. You try to tease it out, because intuitively it seems like a good idea. What Frank is saying is that when you aggregate it, then you can see it much more clearly. I'm not sure that there is a contradiction between the social analysis and the individual moral analysis. I think the social analysis helps to illuminate the moral analysis by saying that if you do it on a societal basis then it jumps out at you how distorting and dehumanizing these activities are. PROF. GEORGE: Distorting and dehumanizing will be concepts that are intelligible only against an understanding of the human. The understory of human flourish – DR. KRAUTHAMMER: No one is denying that. Everybody is – CHAIRMAN KASS: Everybody who's spoken I think agrees to that. PROF. GEORGE: Well, I think Michael was saying to Frank – Michael, you can speak for yourself, but I think what he was saying to Frank is not that he was denying it, but it was just left untreated. CHAIRMAN KASS: Unspecified. PROF. GEORGE: Right. CHAIRMAN KASS: Right, okay. Yes, well, in fact, in the paper, I mean, in terms of the ends, which I've lifted up to view as the ends that seem to me to be most likely candidates, attractive candidates for personal use, namely ageless bodies and a certain understanding of happy souls or at least not unhappy souls. When I came to try to make the case against what might be wrong with the pursuit of ageless bodies, I thought the only way you could begin to show that, in fact, was to aggregate the consequences and have a look at what it would like if that were the practice of a population as a whole, in the mirror of which we might be able to see how it might be deforming for any given life to live in a world like that, and that only by somehow aggregating the multiple choices and picturing what that means, both with respect to the perception of time, the shape of a life, and various other things that do touch. I did admittedly, not with much precision, listed a number of things that I thought to be fundamental human goods that were at risk here. I mean, I don't think, having read some things of Frank's, I think there are things – I think he could, if we stopped speaking, let him speak, he could sort of fill in that content for himself. I mean, there is some sense of human nature, not something absolutely inflexible, but nevertheless the activity of which and the flourishing of which is what one is trying to defend here, and the attempt to somehow improve it by piecemeal intervention without regard for the complexity of the whole of it is to run the risk of degrading ourselves, not just getting things to go wrong. Am I? PROF. SANDEL: I've got – Now, we're going to end at 3:30 or after? We started late. CHAIRMAN KASS: Take five extra. PROF. SANDEL: All right, because I still have, I've got Bill and Gil and I was tempted to take one more crack at this issue, but maybe put that aside? No. CHAIRMAN KASS: Go ahead. PROF. SANDEL: It seems to me there are two different ways in which aggregating consequences can help us better understand the effect of some of these practices of enhancement. The way that I understood, Leon, you to be aggregating consequences in order better to see the moral defect was if we imagine, when you invite us to imagine what would happen if people didn't age, but just suddenly died, and wouldn't this have the effect, if you imagine it aggregated across a society, of changing certain important practices and understandings that we have. So that's aggregating consequences in a way that highlights the moral defect of the practice. It transforms our relation to one another, the relation between the generations deforms, relations of parents to children and one's own self-understanding. There's a second way of aggregating consequences to show what's wrong with enhancement that doesn't aggregate in order to show here how morally we would transform ourselves, but instead shows here if you imagine the arms race, it wouldn't work, morality aside. The example here is Frank's first example about enhancement to increase height, where parents could go and get growth hormone to have their less than average child lifted up. But then if we aggregate that, Frank points out, and imagine everyone doing that, why then it wouldn't work. There'd be an endless arms race. People would have to go back again and again just to try to stay ahead as the average height increased. Now, that's an argument against enhancement that appeals to aggregated consequences, but at no point did those aggregated consequences highlight the moral objection to the enhancement. They have all to do – this is what I meant by emphasizing the social coordination problem of the endless arms race – it simply wouldn't work to achieve the individual aim. PROF. FUKUYAMA: My first two examples are completely utilitarian. That's right. PROF. SANDEL: Rebecca, quickly on this and then we'll go. PROF. DRESSER: One methodological point. It seems to me as a public bioethics counsel, our strategy is best to bring in all these different considerations, because we have this problem of convincing others, including the common culture and physicians and so forth. So I would rather use these in an additive way and that's one thing I liked about our cloning report. CHAIRMAN KASS: We agree completely. PROF. SANDEL: Okay. I have Bill and then Gil. DR. HURLBUT: When I read this essay, I was – I wholeheartedly agree with the central insights of the essay, but as I was reading it, I was asking myself what is this happiness going to be like that you're hypothesizing? Indeed, what would agelessness be like? Well, starting with agelessness, it certainly isn't going to be the overcoming of death, because there would always be the possibility of death from accidents or homicide. So that's going to linger over us like a shadow for sure. Then, what would this happiness be like? Well, the happiness can't be a static state of comfort, because creatures as complicated as human beings are made happy by something that is dynamic in the ability to meet an ongoing series of possibilities. It's an open phenomenon. So I was asking myself what enhancements could lead to such states? Even if you hypothesized they were possible, what would these enhancements be like? It all came back down to me to a little bit what Frank was talking about. Well, where did we come from, what are we for, and the question of what does happiness mean at all. Looked at from one perspective, happiness is an agency of evolution. It's related to drawing us into that which is good for us as organisms and for evolutionary process. Looked at another way, happiness is that blessed possibility given to us by whatever it be, God or evolution. In that sense, what it seems to me is at stake here in the very center of the core of this is the question of the meaning of the natural. How does happiness relate to the given world? Its human dynamics, its dependencies, its modes of creative extension and so forth. You defend very well in your essay and you illuminate the notion that being at work in the world as we find it could be very crucial to our happiness; that it's not just as we find it, but as we could be perfected without ceasing to be ourselves in the process of it. So, when I started looking at all that together, I don't know if this connects easily, because it's a hard thought to get at, but why are we as we are and what makes for happiness? It struck me that we are as a creature a general purpose organism, a best balance of body, mind and the real world such that we have certain qualities of freedom and open-endedness, and that all of these enhancements are in some ways self-limiting. They are taking us off – not up higher, but taking us beyond the top of that which is our most central quality of human nature. This is a hard thought. I don't know how to say it easily, but when I think of what would you do these enhancement projects for, I ask myself, well, why would you do these interventions against given nature, and even when you consider there's a risk involved. The first one that comes to my mind is the trivial uses of them. The sort of indulgent pleasures or whatever it might be, what's been called "free play", a kind of indulgence in aesthetics of the body or some superficial contentment, which is sort of like what Nietzsche called pitiable comfort, that trivializes human life. One can see right away why that's wrong. The other one would be competition. That seems to me to be – that has a little more bite. It is a giving over to another natural impulse, so we're losing ourselves in a way that way too. But the third one that struck me is noble purposes. When you look at what happiness is, you clearly aren't going to get happiness by taking a drug. The whole of the unfolding of life is a process of removing us from the level of the basic molecules of determinism into an arena of agency where there's a rising scale of indeterminacy, of freedom that's emerging. So there's no magic carpet to happiness or contentment. Contentment actually relates in some strange way to the process of life. It's like, maybe you could change the dye a little bit, but that wouldn't change the – it's like, if life is a Persian carpet, you might be able to change the dye temporarily, but life's happinesses are actually the pattern put in one knot at a time through living. In that sense our happiness is related to ideas, concepts, cosmology, not to the color but the pattern of life. So what pattern of life would give us the meaning that would, in fact, be happiness? I don't think the self-limiting that would be involved in the trivial or the competitive would do that, because I just don't think they would. I don't think there's any way to engineer those kinds of things. But what struck me in this is that there is a way where – there's an amazingly interesting thing about all this where the meaning of agency is also connected to the deepest happiness. Where – and this is where the triviality of the individual or the competitive quality actually are solved. Where the individual and the community meet. This brought me back to Hans Jonas' essay that we read at the beginning of this project on enhancement. It struck me that there was something profoundly beautiful and true that, as he spoke about the meaning of human experimentation, and he spoke about that devotion, that dedication, that sense of true sacrifice from the highest devotion, and how it's absolutely free. The sublime solitude of dedication and ultimate commitment away from all reckoning and rule into a whole different sphere. That struck me as the thing that's the highest extension of this quality that Leon speaks of as being at work in the world and being perfected through an agency that keeps us – that moves us toward perfection, but also keeps us, preserves that inner essence of what we are. That struck me as the one place where enhancement meets. This is a very hard thought. I'm not sure I'm getting it across, but it struck me, that's where enhancement meets and coordinates with this true human meaning. It's – You can see how you could use enhancement as a surgeon, or maybe for some explorer, exploration or artist. All these involve that dedicated devotion, but they engage the full human faculties, and they increase dignity. They all have an element of giving, of being used up, and this is where the meaning of the natural seems consistent and the other uses of enhancement seem inconsistent. That was a very hard thought. I'm sorry if that was so wordy, but I think there's something in there. PROF. SANDEL: Gil? We're running close. Why don't, Gil, you make your comment and then Leon can respond in general. PROF. MEILAENDER: Okay. I had two points. The one is just a very minor quibble, the other Frank's having rubbed your nose in social realities, I want to get you to think about something very ethereal. The very minor quibble, I want to make it, even though you understand that I think this is a great paper. But very near the start, on page two, you contrast what you're going to take up – or you say it will get us beyond our narrow preoccupation with the life issues. I'd just like to encourage you to find a different formulation. It's a different preoccupation, but there's nothing narrow about seeking to honor the time and the place that every human being has. DR. KRAUTHAMMER: He meant endless, not narrow. PROF. MEILAENDER: Oh, well. (Laughter.) PROF. MEILAENDER: He may have meant narrow, but this is an old conversation, but I wanted to encourage you. Now the other point. I want to see if I can get you to think about heaven, because in your wonderful last section on dubious ends, you make various kinds of claims that we need our finitude to make possible the best things; that the very prospect for human happiness requires the possibility of deep unhappiness. You say things like that, and that might not make too much difference if you didn't say in your last paragraph that the life that you've described is a life that stretches towards some fulfillment to which our soul has been oriented. The question would therefore be whether – what one would mean by such fulfillment, whether we can conceive of fulfillment that is only destructive of the best life, as you've described it, or whether we can conceive of fulfillment that would somehow complete it and be fulfillment in that sense. PROF. SANDEL: Gil doesn't like the Greek flavor of this, Leon. CHAIRMAN KASS: Or Hebraic. DR. MCHUGH: Can I just finish up one other thing before? I just for 30 seconds want to remind you that what we're doing in a sense is some people would say reinventing the wheel as we look at the problem of beholding and the tension with it that you make with transforming, because there was a person in education that saw those two things and brought them together, and that person is Maria Montessori who you remember had as her theme the biological concept of liberty in pedagogy. She said that the child must be free to act spontaneously, but should fit an environment that's ready for his spontaneous action, what she called auto-education that we need to work with, with the idea that growth should be enjoyed, beheld, but at the same time helped in ways that speak to liberty. Her work is something that we should remind ourselves of whenever we are thinking that maybe no one ever thought of these two things and bringing them together successfully. PROF. SANDEL: Thank you. We'll give Leon the last word. CHAIRMAN KASS: I should be brief. First of all, thank you all for taking the paper so seriously and offering helpful comments, and there's lots more to think about here. Bill Hurlbut, we should talk further, but I got something from that. It seems that to talk somehow about the natural or the natural and fulfilled or the natural and improved without ceasing to be what we are, and then to try to give it some specificity, whether it's in terms of open-endedness and freedom as you and Paul were saying, or whether other kinds of qualities don't have to enter into this, that's the hard task. I mean, the natural of the squirrel is a lot simpler than the natural of the human, especially because of the indeterminacy and how much is filled in by culture and the like and we're not going to – It seems to me one might be able to make a case for not squashing certain kinds of human capacities without having to settle the differences amongst the various cultures as to how they try to fill in that view of the perfection. I mean, there is a way in which we can read one another's culture and recognize them as human, even as we continue to fight about who might have the clearer understanding. So it's a matter of not letting the human floor fall below the possibility of reaching for whatever account of the fulfillment that we have. I thought it was probably as far as we were going to get in this Council when Robby George last time tried to get Michael Sandel to see whether he was willing to take on the proof of the existence of God, but now you give me heaven that I have to deal with. PROF. GEORGE: By the way, I think we should hold any discussion of heaven until Michael Gazzaniga is here. CHAIRMAN KASS: I am at best an agnostic on heaven. At best, and it doesn't enter into my – PROF. GEORGE: How about hell? CHAIRMAN KASS: More likely. No, it seems to me that to give a kind of anthropological answer is to say that part of the reason why so many different cultures have somehow postulated a life hereafter, and I don't mean to say that they've postulated it because they haven't divinized that there must be such a thing, but why it shows up in so many different places is partly to give a hopeful answer to the fact that there seems to be a gap between the aspirations to which we are pointed here in earthly life and the fact that we don't get there. Therefore, there is a hope that there might be a different and a better life in which those aspirations could be realized. For myself, I'm content to be aspiring. I don't insist on the guarantee. That may be shallowness on my part, but I take this direction as a gift. Whether or not there's a giver, and whether or not there is a better place in which you and people of your ilk might someday go, I'm probably going somewhere else if there is such a place. DR. FOSTER: Well, Leon, there was a famous rabbi who once said, "What I aspired to be and was not comforts me." PROF. SANDEL: Well, those are two graceful notes on which we can end by thanking Leon for a very stimulating paper. Thank you. CHAIRMAN KASS: Let's take ten minutes this time. We're, as usual, behind. SESSION 4: BEYOND THERAPY: CONTROLLING THE SEX OF CHILDREN
CHAIRMAN KASS: While the last – let's see we've got I think Janet and Charles. Well, let me just remind people – this will take a moment. You have your information about dinner, which is at 6:00, at 1201 F Street, which is a couple of blocks south and west of here, but walking distance for sure. Again, I remind you, these additional materials are for tomorrow. Professor Merrill's outline for his talk, along with his advance paper, and then these materials which will help us get started in the discussion of neuropsychopharmacology and the questions of social control in the discussion we'll have for ourselves before the public session. In this session, we move from sort of general questions of Beyond Therapy to a particular case of it. The staff, as I indicated to you, has been working up several of the cases on which we had expert presentations in the months from – well, actually starting in July, but mostly September, October and December. The paper that was sent to you, a working paper prepared, in fact,
by Adam Wolfson, primarily, with a little help from others. Adam,
I should say, has been made the full editor of The Public Interest,
and as a result of that assignment has had to give up his one day
a week with us, but let the record show how much we've appreciated
his work for us, and we hope we can bring him back here simply to
sit in and join us. But this is a working paper of interest in its own right, but also of interest as a kind of model for what we might be doing with some of the others. This one falls somewhat short by design on the technological side. We will beef that up in a subsequent draft, but this at least gives us something to go on and something to talk about. In the constructive part, part two of the paper, we have a section on terminology and an argument made as to why we should call this "sex" rather than "gender", and "control" rather than "selection". We have some discussion about why this might be an instance where the principle of liberty might run into some limits, namely that because children are involved and it is their identity which is at stake, this is not purely a self-regarding free activity, and also owing to the possible changes in the sex ratio that there are social effects that might be socially costly. There are two arguments having to do with the human context, one following from the fact that this is control of sex, and the other that is the fact of some choice or control or foreordaining of a certain important feature of human children, that we have two discussions in parts three and four of the human context having to do with the meaning of sexuality as an essential aspect of identity, and then returning to the questions of choosing a particular child and how this feeds into matters of manipulation and parental control, and then finally a section which is not written, but depends, in fact, upon what the Council is interested in saying for itself, where the question of policy is at least raised as to whether or not there's something on this topic that we'd at least like to flag, whether as recommendations or more likely as alternatives. Nothing specified there. It seemed to me that it would be useful to go around to see what kind of general reactions one has to this analysis. I think one should know that at least there are certain winds of change in the assisted reproduction community, moving in the direction, I think, of favoring the use of some of these techniques and I was told since the last meeting that there are quite a number of clinics, especially out in California, in which they are, in fact, doing this, using PGD for this purpose already. The fact that there are already changes in the sex ratio at birth in this country among certain sub-populations means that the practice is going on, I suspect, probably more with sonography and selective abortion than with preimplantation genetic diagnosis, of which there have been, I think, only about one thousand births, so that's hardly enough to produce the kind of skewing that we have seen. But I think what we should do is try to get some reaction to a form of presentation and moral analysis, and then see where Council members are as to whether this is a worrisome enough matter in which we want to do more than just present the analysis. So let me just declare the floor open for substantive comment first and then policy. PROF. GEORGE: Yes, Leon, on the subject of sex selection abortion. Of course, the country has had a running debate over abortion itself for 35 years or more now, but my sense is that there's a fairly wide consensus that sex selection is not a good reason for abortion, and I believe that there are jurisdictions, I don't know if these laws are enforced, but there are jurisdictions that at least prohibit sex selection in cases of late-term abortion. I might not be right about that. I'm sorry Mary Ann's not here because she would know right off the top of her head, but if in fact sonography leading to sex selection abortions is a significant part of the change in the ratio, then I wonder if the morality of sex selection abortion really ought to be front and center in a public debate. CHAIRMAN KASS: Give me another sentence? I mean, just elaborate how you'd want to formulate? PROF. GEORGE: Well, if it's true that there is a consensus in the country that sex selection – whatever people's views about abortion are – that sex selection is not a legitimate reason for abortion and ought not to be – abortion ought not to be permitted for purposes of sex selection, then at least the public opinion basis for public policy in the area, and what that would be, whether at the national level or at the state level, and exactly how such laws could be drafted and whether they could be enforced and so forth would all have to be discussed, but in any event, the public opinion basis for legislation in the area would seem to be there. CHAIRMAN KASS: Does anyone, Rebecca, do you know is there law on this? PROF. DRESSER: I know that at least Pennsylvania has that in their statute, but that wasn't part of the case that challenged that law because it's not enforced. The problem, or one problem with these things is that people can go and say, "I just want this pregnancy ended," or, in these other situations, "I want PGD for some other reason." Now it would be more difficult to come up with something because that's a newer technology, but you don't know what the true reason is, so it's an enforcement problem. In the context of diagnosis, I mean, there have been discussions of prohibiting physicians and genetic counselors from telling the sex, and that would be a place where you could try to enforce it and just not pass on the information, but people have said that's pretty difficult and have had a lot of objections to that. PROF. GEORGE: Could the medical people say at what stage in gestation it's possible to give a pretty clear answer as to whether you've got a boy or a girl? CHAIRMAN KASS: Sixteen to eighteen weeks, right? DR. ROWLEY: It's got to be very much earlier than that. DR. FOSTER: I think it's much earlier than that, about 16 to 18 days after – CHAIRMAN KASS: When the tests are done? DR. ROWLEY: Well, yes, but you can get fetal cells and do FSH analysis with X and Y probes until – I mean, they're doing chorionic villus at, what, 12 weeks or earlier, so that it's – DR. FOSTER: Yes, I misinterpreted the question. We know phenotypically about the 16th or 18th day what's going to happen. You remember that if the gonads are removed, that the phenotypic development is female. So what makes a male is when the testes develops and injects testosterone, and then there is the Mullerian ducts in the female apparatus then is atrophied, and the male duct system goes on, the testes have to move down to the inguinal region, all that sort of stuff. But remember that what you get if you have no gonads is a phenotypic female with a short, blind-ending vagina. There's no reproductive capacity there. If it's an XY, you know, if you know that it genetically, as Janet was saying, is a male, it's an XY, we know that, let's say, from a biopsy or whatever, but if you remove the testes, then both the male and the female develop in the same way phenotypically, and that's known, if I'm not mistaken, at about the – I think the testes kicks in about 16 to 18 days, something like that. So what you get, it's a good argument for that the universe really wanted only women, but then it got frustrated from there. So you know the genetics immediately, whether it's an XX or an XY if you tested for it, but you don't know phenotypically, even if you're an XY, something can happen, and that may be because you don't make any testosterone or the testosterone doesn't work. The classic example is what's called testicular feminization, that you go ahead and get the testes, but the receptor for the testosterone is totally resistant to the action, and so what you get is generally voluptuous females, they have heavy breast development and they have short, blind-ending vaginas. They characteristically, in the full-blown state, have no sexual hair at all. There's no axillary hair or pubic hair and so forth. It's a very, you know, the wife of the Shah of Iran was a testicular feminization. Kim Novak was a well-known testicular feminization. Males who appear – we had the head of a convent who, it was discovered, was XY and it was a huge problem for her to have to deal with, she says, you know, I mean I'm a woman, but I mean, genetically I'm a man. So that's the way the problem works. PROF. GEORGE: What I was wondering is is the procedure that Janet described routine, and how invasive would it be? My understanding is that sonography is now routine and it's minimally invasive, but I take it that you can determine sex by sonography only much later than by the technique that Janet described. DR. ROWLEY: That's my impression. CHAIRMAN KASS: Bill Hurlbut. DR. HURLBUT: What you're asking is when can you see it on a sonogram. There are more invasive methods like amniocentesis and chorionic villus sampling, where you have to look at the cells, but you're saying when's it real easy to see, cheap and quick. Well, with a sonogram there's a time at which you just can't resolve close enough, and I think that a figure for when you can detect sex is around 12 weeks. DR. ROWLEY: On sonography? DR. HURLBUT: On sonography. It's later than that? PROF. GEORGE: Well, the reason I think it would be good to know is that if we can agree that sex selection, whatever people think about abortion generally, that sex selection abortion late in term is not ethical and ought not to be – well, at least ought to be discouraged at a minimum, it seems to me that then you might be able to think about public policies that would, minimally at least, discourage that ground for feticide. DR. ROWLEY: Well, let me just follow up on this. It seems to me that for couples who intend to have only, say, male children, they certainly would use one of the more invasive techniques that can determine this very much earlier, and there's talk of trying to get fetal cells from the uterus much earlier where you then could determine this. There are also techniques that are being used by some clinics looking at the shedding of fetal cells in the maternal circulation, and looking for XY cells just in the blood of the mother. There are certain problems with that, and to my understanding – this is an area I'm pretty much not well-informed on, but there are – if a mother has been pregnant before with a male child, there can be residual cells from that male child still circulating some time after the child has been delivered, so that can be a confounding factor. At least that's my impression, but the most reliable way would be to actually go in and do some kind of a biopsy and as Dr. Opitz, who I guess isn't here, could probably give us a far more informed statement than I'm going to make. As he indicated, some cells in the placenta are of fetal origin, so that you would be able to, with biopsies properly done, to get fetal tissue without actually doing anything deleterious to the fetus. CHAIRMAN KASS: Rebecca, please. PROF. DRESSER: This is not on this direct point. Is that all right? CHAIRMAN KASS: Please. PROF. DRESSER: Okay. I think this paper is definitely something to work with. I had two broad points I guess. I would like to see something in here which, in fact, ties into the previous discussion on enhancement, whatever it is, which is talking about this as a practice of medicine and whether it fits professional integrity ideas about this, what's appropriate for medicine to do. I think if we want to say anything about public policy, professional standards and what insurance should cover and all those kinds of things would be tied into that theme, and that also might be something that some people would find more persuasive than some other things. So I would like to see more of that. The other thing is I do not like it that people want to do this, but at the end of the day, as I finish reading this paper, and I don't know that this will ever exist, but say there were a completely safe system of sperm sorting, and reasonably accurate, so that we would say, if the FDA were regulating it, if it's effective enough, and people wanted it for non-discriminatory reasons. Now we could talk about what qualifies there, but you know, they have a girl and now they want a boy, whatever. It's hard for me to say those parents are immoral in what they want to do. It's easier for me to say it's wrong for physicians to offer it or physicians to use their skills and talents and the resources that they have and what we've invested in their training and so forth to perform this, but I still find it difficult to say, you know, I can say I don't think it's ethical, I don't approve of it, I don't like it, I wish you didn't want to do it. I think it's misguided, but to say it's immoral, I'd like to hear some views on that. CHAIRMAN KASS: Actually, could I try you on the other half? Maybe it would help us if you could say why you don't think they should do it or why they're misguided. That might be sufficient unto the day. PROF. DRESSER: Yes. Well, I find it – I think that most people when they say they want a boy or a girl, and let's say outside of a certain cultural tradition or religious belief, they're saying that because they think, well, there's a certain relationship I want to have with my child, or certain hopes, aspirations I have for my child, and I'll only be able to have those if it's this particular sex. I think that's sad. I think it's confining for the child. I think it's confining for the parent. I think it would not necessarily promote a good relationship, and I guess that's this common sense, my basic problem with it. CHAIRMAN KASS: Would someone join Rebecca before we move away and let's just pursue this question. Alfonso, please? DR. GÓMEZ-LOBO: Yes, on the moral point, of course any moral judgment needs a broader story, a broader context I think. So let me provide a little bit of it. On the one hand, there's this consideration that was brought forth by Frank, that a singular act or an act of a particular person may have ramifications for the community, for the whole, and that's very worrisome in this case. So that would be a consideration that we should in our choices consider how we're going to affect the common good when we choose. Now, when we come to the particular level, the level of the personal choices, I don't think we can do away totally in this case with the prejudice against women. I think that it's fairly clear that in those places where sex control is practiced, it's clearly anti-feminist biased. Now, but the broader context I think is this. I think one can argue that not all desires ought to be fulfilled. In other words, we have desires for things good, and they're legitimate, and sometimes we have desires for things that are bad, and those are the ones that if we heed to, we would consider the act immoral. My basic intuition here, for whatever it's worth, is that there's nothing wrong with having a family, as I do, with more daughters than sons, for instance. There's no human good imperiled by having more children of one sex or the of the other sex. The human good of the family does not depend on that, so I'm inclined to say that any motivation to make this choice, whether by immoral means such as abortion, or by perhaps permissible means like sperm selection – sorting, sperm sorting. Still, there is something about a human desire to aim at a good, which really is apparent, because a family with girls will be fine. Now, there is the cultural problem, of course, namely those societies which are strongly biased against girls. But of course, as a moral philosopher I would have to say, well, so much worse for the culture. I mean, there has to be something of a – hopefully a realization that there's something deeply wrong in what they're doing, particularly if they end up having these skewed ratios. There surely has to be some reflection about the morality of the actions that lead them to this quandary. CHAIRMAN KASS: Could I just ask Alfonso a question? The social argument and the sexist argument are clear, but I thought the other argument was incomplete. If you said there's nothing wrong with having a family that's mixed, the question is would there be something wrong with determining to have a family, assuming for the moment that, let's say, one chose to have a family of all girls, and that it didn't contribute to some – in other words, the fact that this is not necessary to achieve a human good doesn't necessarily mean that the attempt to use it is worse than neutral, let met say. So, do you think this is worse than neutral? DR. GÓMEZ-LOBO: I see the problem. As I was explaining it, I suddenly saw the objection in my mind. I think – Let me think about it for a day or two, because I think there must be a problem with that. Otherwise, well, I would have to fall back on the impact on the social good, and say, well, maybe it is legitimate for me personally to do this, but on balance, you see, the community may suffer if there is generalized sex selection at will. PROF. SANDEL: But falling back on the social good isn't going to help you in this case, because in the United States so far, both in the use of this micro sort sperm sorting and in surveys, people actually go more for girls than for boys. So that won't necessarily give you grounds for opposing this if you want to oppose it. You're going to need an affirmative moral argument. CHAIRMAN KASS: And by the way, for what it's worth, the working paper has a couple such arguments. I mean, in sections three and four, which perhaps they might – maybe they didn't strike you as – DR. GÓMEZ-LOBO: May I make a different sort of cultural remark. There is this footnote on page 22 which I found interesting, which talks about the advantage that can arise for women from the skewed ratio. I've heard that it's already happening in India, that they're switching from dowries to bride money. Namely that now, instead of the family of the bride having to pay the groom, families of boys go out there and pay families. Culturally, this is just a particular thing of mine, it's interesting because in the ancient Mediterranean in the second millennium B.C. in archaic pre-history there's a switch from bride money to dowries, and it's unaccounted for. There isn't an adequate explanation, and maybe this provides a clue. CHAIRMAN KASS: Small thing on this? DR. HURLBUT: Yes, it's important to recognize that that isn't necessarily a salutary transition, because it has been noted that when women are scarce they become chattel, a kind of chattel, and – well, you get it. Just one little comment to this too. It would be natural if it's a balancing act, if you were trying to balance your family to have a higher skewing of choice for girls, because there's a natural higher birth rate among males. Do you see what I mean? 105 to 100, I don't think it's quite that high, but that's – yes, in the paper it says 105, but I think that's – CHAIRMAN KASS: Up to 105 I think is regarded as within – DR. HURLBUT: But you get my point? CHAIRMAN KASS: I think we're going to have a small bit of piggybacking here. There are two people waiting here, but Frank this is something on this last comment? Please, small. PROF. FUKUYAMA: Well, I just think all the evidence shows that actually a sex ratio skewed against women is good for women, and it promotes actually a lot of social values that people like when you put women in the driver's seat in marriage markets. CHAIRMAN KASS: Like large gangs of unmarried youth? PROF. FUKUYAMA: No, that's not, but in terms of stability of family life and a lot of other things. CHAIRMAN KASS: I have Janet and then Gil. DR. ROWLEY: Well, I sort of echo Rebecca's sense of caution here, because I think similar to the discussions that we had earlier about your paper, that it very much has to be looked at in the context of the particular situation, and I can see why a family where, say, there are already two children of one sex might strongly consider trying to increase the likelihood of having a child of the opposite sex, so that you really get mixing within the family of boys and girls, and they learn to grow up together. So I think that, as I say, we do have to look at the context. CHAIRMAN KASS: Janet let me ask you this. I mean, it's also conceivable to me that some family with, let's say, three boys or four thought for its own good or bad reasons that if you had five you would have a basketball team, and that the choice might not be for its own personal reasons for one of the opposite, but for another like. The question is are we in a position, if we sort of relativize this to people's circumstances, to sit in judgment and say balancing, that's okay. More of the same, that's suspect. Or do you want to say, well, look, who are we to judge the parents and their own circumstances. They probably have their own good reasons for liking what they like. Are we going to be able to – or is each case absolutely going to be different and there are no – going to be general principles? I mean – DR. ROWLEY: Well, I'm the mother of four boys and I have to say that the lack of a daughter hasn't been a great tragedy for me because my sons are marvelous, but at the same time, I certainly would have liked to have had a girl. I think this is an area we should leave alone. CHAIRMAN KASS: Leave alone meaning leave it unregulated. DR. ROWLEY: Leave it unregulated. CHAIRMAN KASS: Gil. PROF. MEILAENDER: Brother of five sisters. (Laughter.) PROF. MEILAENDER: It can be tough at times. I want to come back to Rebecca's point also, because I think she has articulated a kind of concern that many people have here, and I want to make just a very simple point with respect to it, and that is that whatever we think the complex relation between law and morality is, it may be useful when we're thinking about these matters to keep them a little separate and to start by thinking about morality. In other words, I wonder, Rebecca, and I certainly don't wish to put words into your mouth, or thoughts into your mind, but the kinds of hesitations that you expressed I think we feel most strongly if what we're thinking we mean when we say, "It's wrong," is – and maybe we should publicly prohibit you from doing it, or something like that. We get very cautious at that point. If you think of a good friend talking to you and asking you, `Do you think I should do this?' it has a different flavor. Now even there, I might distinguish between saying to a friend, `Oh, I don't know if I think that's wise,' and saying, `I think it's wrong,' but there certainly are many occasions, and this might well be one of them, in which I could conceive of myself saying to a friend, `No, I think it would be wrong of you to do that,' without necessarily making a judgment about what I'd want to say if somebody wanted to transpose that into law. So it just seems to me that it may be useful for us if we want to make any progress to think first of all about just what do we think about this as a moral practice without thinking that that rushes any conclusion about what a policy might be. I mean, I like the fact that the policy section was blank there, and the kind of what I take to be the principle argument, well the negative externality argument's one, but the other principle argument put forward, which has to do with the issue of control, and the way that has an effect on the relation between parents and children may be best thought about first as a moral argument, whatever one does or does not then conclude about possible policy options. CHAIRMAN KASS: Having the floor and having, I think, wisely encouraged us, and by the way I second this completely. There's talk about prohibition, and getting in the way of this is not on the docket here, but having sort of steered us in this direction, would you offer a moral judgment on this, either responding to Rebecca or to Alfonso and to see if we can move the ball forward. PROF. MEILAENDER: You want me to say something stronger than just, "It's not wise." You want me to offer a –
CHAIRMAN KASS: Or just – PROF. MEILAENDER: Well, I'd be happy to, and I think, in fact, that one of the interesting things about – there are several interesting things about the argument presented in the draft. One is that it takes seriously the importance of sexuality, over against those discussions of it being a non-essential characteristic and so forth. The other is that what I take the argument developed most fully in it, actually brings us back to some things that we talked about and, in fact, wrote about in the cloning document, namely the sense in which too strong an attempt to control the characteristics of the next generation distorts the relation between those two generations; sort of undercuts some of the chief parental virtues and I think that that's morally very problematic, and I can conceive of myself in many circumstances being willing to use the "wrong" word. CHAIRMAN KASS: What if one were to say, Gil, granted that sexuality is an important aspect of one's identity. I'm not sure it's the most important, but it's certainly an element. But after all, they're really basically, leaving aside some minor variations, you're either X or Y, and it's not quite like entering into the control of all kinds of other things. What's the big deal really in terms of the kind of control? I mean, it is an element of control, I grant that, but couldn't one say that simply sort of controlling something that's going to be there anyhow one way or the other, it's not all that decisive.
I mean, what would you say? PROF. MEILAENDER: You don't think it matters that you're male rather than female to the you that you are? CHAIRMAN KASS: No, I think it does. Sure. PROF. MEILAENDER: I mean, every cell of your body is marked by that. It's impossible to conceive of your being the person you are were it not for that, so I guess I don't – I mean, unless I'm missing something, I don't understand why you would suggest that it's a trivial matter. I mean, all the other sorts of things that people have the ability to get worried about. You're going to have an IQ too, you know, and some people think it would be nice to have it be 140 rather than 120. So I guess I don't see the nature of the argument. Yes, presumably you're going to have a sex, but that doesn't make it an unimportant matter. It still may be something that marks and constitutes the person that you are. CHAIRMAN KASS: Let me think about it some more. Robby? Bill May? DR. MAY: I think the word that you used, Rebecca, earlier was "immoral." Hardly, however hard Gil would argue, would not seem to be immoral in the way that pedophilia would be viewed as immoral, and so forth. I, unfortunately, picked this up very late, and so I have only skimmed it, and maybe it does deal with this problem, but an interesting issue if it can be done for this reason, to what degree it presents interesting problems, not simply in one's understanding of parenting, but the relationship of the man and woman to one another as one. As things stand now, you tend to – we've decided to have a child, and a kind of openness to the unelected element in that, and if it can be subjected to control, that control spills over in a problem not simply in the relationship with the parent to the child, but maybe some elements of forcing in the relationship of the mates to one another, not that the dominant mate would necessarily win out. But it does create an interesting problem in the conjugal relationship that is not quite there in a setting where this is not viewed as an acceptable reason for eliminating of the gender, the sex, you don't want. PROF. GEORGE: Yes, I certainly think that is a very good point, and something really to be considered. I'd like to make two separate points. The first is the subject matter of public policy isn't always prohibition or permission. Often it has to do with other matters. For example, quite apart from the question of whether any particular technology for sex control is to be prohibited or permitted, there's the question of whether insurance coverage for it will have to be provided by employers, whether employers who are morally opposed to it would have an exemption from any mandatory coverage. Recent history suggests in a lot of cases where you have a controversial question, an argument for permitting the practice might begin as an argument for liberty, saying well we have disagreements in this culture about the controversial practice in question. Let's just leave it up to individuals and not impose any societal judgment. Then, a few years go along, and what was considered an evil that has to be tolerated seems to be transformed culturally into something that's accepted as a good, and something, then, that has to be paid for with public funds, and perhaps imposed on dissenters who, as a matter of moral judgment, don't wish to pay for it or pay for insurance coverage for it, but who are now considered to be behaving wrongfully in resisting, implicating themselves in the practice. So I don't think we can escape, even if we lay aside the question of prohibition, I don't think that we can escape public policy questions on an issue like this. Public policy questions which will have to be grounded, ineluctably I would say, in a moral judgment one way or another. Then the second point is this. It seems to me the heart of the argument here is the control argument as it's put forth in the paper, sketched at least in the paper, page 25, section D, the point about sex control challenging the fundamental understanding of procreation and parenthood. I think that's right. Leon, in his devil's advocate role, raises the question about, well what's the big deal about this element. I think the use of the term "element" there is instructive. Looked at simply in abstraction from the rest of what's going on in procreation and child-bearing as it's practiced in the culture, looked at in abstraction, yes, it doesn't seem like such a big deal, but as an element of a larger pattern, really a movement of procreation in the direction of being treated as a kind of manufacture, the child being the product at the end of the manufacturing process, I think it's a ground for a very serious concern. Here again, to harken back to a point that I made in an earlier discussion, here I think we have an example of something that simply cannot, at the end of the day, be left to individual choice, because the character of that fundamental understanding of procreation and parenthood that's going to affect everybody in the culture, the character of that is going to be shaped by a lot of individual decisions adding up to a large cultural understanding which then in turn affects the decisions that people make, and even the options that they have as they're constrained by informal matters and by formal constraints such as law and public policy. Now, what that understanding is going to be, then, really is a social decision. It doesn't mean that public policy is the only way to address that cultural understanding, and to try to shape and affect it for what one considers to be good, but it does mean that we can't simply satisfy ourselves to think that, well, look, this is a matter of individual decision and people can simply be left alone to make decisions as they like. There will be social consequences of it, not simply in a kind of concrete, material sense, but perhaps even more importantly social consequences affecting the large cultural understanding of what procreation is and whether there's, in fact, a difference between conceiving of a child as a gift and conceiving of a child as a product. It could be that the capacity of future generations to grasp, to understand children as gifts and not products will be profoundly affected by decisions that we make today and in the next few years about what the shape of that cultural understanding is going to be. CHAIRMAN KASS: Someone want to respond to Robby? I mean, Paul is waiting, but do you want to join this in particular? DR. MCHUGH: My comments are a little bit along that line. On the other hand, I have a lot of sympathy with what Janet has said. Let me put it this way. I was – my major concerns at first were exactly along Robby's lines. That is, we're going to affect – children do not just belong to us, they belong to the world, they eventually become part of the world. Not only that, even in the family, before they are outside of the family they affect the community, and I know that and I've spoken to you before about it, about how recruiting people to my department, I've discovered I was recruiting families and the families' children interacted in the community in most wonderful ways, athletically, academically, and the like. So, it is really important, and we could change our whole view, perhaps, of the world if this technology became so dominant. However, my other concerns and objections to this related to cultures that were prejudiced against one or the other sex, and that they expressed this both in relationship to feticide, but also in infanticide. We're seeing that right now in China. They are fundamentally killing girls left and right, and our friends go there and rescue these little girls out of the mouth of the dragon, really, and they come here, and that's wonderful. On the other hand, if we are in a culture in which we appreciate women and men equally, recognizing their wonderful diversities and similarities, if we say killing is a behavior that we won't produce no matter what, in any form we won't kill anybody to do this, then it seems to me that the argument that Janet produces is very powerful, that if you have a way of doing this without killing anybody, but by able to selection through cellular biological work, that this becomes a gift itself of our advancing science. Janet says she's had four boys. Well, in my family we had a girl and we had five guys, one after another, one set of wonderful males. Then finally a girl came just a year ago, and boy was there a celebration. Man, we loved it. It was a little girly. It strikes me, well, supposing without killing anybody and without saying that the boys are better than the girls or the girls are better than the boys, I haven't made my mind up, but that's the default position that a kind of a doctor response to, I suppose, and kind of thinks about, and I'd like to be argued out of it, but that's what – CHAIRMAN KASS: Let me try. This isn't an argument, but a test of an intuition on this matter. Would you like to be responsible for the maleness of your son? Right now you're responsible for having said, along with your spouse, yes to his existence. Do you want to be held responsible for whether or not he, in fact, likes to be a boy and for the particular relations that you now enter into with him on that basis? DR. MCHUGH: Well, that would certainly be problematic for me if I had no offspring. If I were saying I'm going to manufacture a boy and be responsible for that. But if my wife had given me several boys, and begged me that we could have a girl, it's hard to say no to her. She's powerful anyway. She has this great influence on me. I'd say no to her never. But at any rate, not just at that, you know, Leon. CHAIRMAN KASS: Do both of you want to be responsible for the possibility that the daughter is unhappy to be one daughter amongst a houseful of men? DR. MCHUGH: Oh, I think I could handle that. That would not be – I think she could be happy or unhappy in all kinds of circumstances. I could manage that. You know, I'm the dad, I can handle that one. CHAIRMAN KASS: You did this to me, Pop. I could have been a boy like my brothers. DR. MCHUGH: I could've been a contender. Yes, well, as I say, I think I could handle that, and I think that would be something I'd be happy to talk with her about. I would be happy to talk with her about what a treasure she is. Now, since I don't think if it were done at that level, the kind of level that Janet and I are talking about, I don't think it would be a big thing in our world. It would be small. I doubt that it would have huge influences on ratios and the like. Okay? So if there's no killing going on, and if we're in a community where we appreciate women and men alike, and we understand that we are contributing to the future as members of the community, then the cellular biological enterprise doesn't sound so bad. CHAIRMAN KASS: Michael Sandel. Thank you for your patience, Michael. PROF. SANDEL: First, I'd like to comment on one feature of this paper that we haven't discussed, which is the attempt to shift the term for this practice from sex selection, which is the common, familiar term, to sex control. I think that's a mistake. It's a mistake, it seems to me, because it's a transparent attempt to make it seem to the American public less attractive. The American public, we know, is in favor of selection and choice and it's against control. Control sounds bad, it sounds tyrannical, it sounds authoritarian, and I think this is a transparent attempt to just rejigger the term in order to bias the discussion. I don't think we should do that. Having said that, I think that sex selection is morally objectionable and should probably be banned. So here I'm going to try to bring out the libertarian instincts of Gil, who will rise up to say why it shouldn't be. But I agree with Robby, and I don't think that we can get to the real heart of this question by talking about sex ratios, because it may well be that the sex ratios would turn out just fine in the United States with a regime of sperm sorting. I don't think we can get to the heart of the issue by worrying about prejudice or discrimination, because prejudice and discrimination are simply a matter of preferring one over another without a good reason. If we're against prejudice at the level of society and a culture and its prejudice, then why shouldn't we also be worried about prejudice at the individual level? If it's preferring one over another without a good reason, then it's objectionable. Well, then there's no good reason to support it, but there is a reason, and I think it has to be – the moral account has to be given, but it goes back to the distinction between a gift and a product regarding a child. It goes back to the discussions we've had about trying to characterize, when we've been talking about enhancement in general, the issue of mastery versus gift. I think there is no case – this, in a way, is the best case, and may be the most fateful insofar as we're worried about the attitude of mastery. It's the best and most fateful case precisely because it needn't involve killing embryos, so that issue is put to one side, and it needn't involve various externalities that can trigger utilitarian worries of the kind that Frank raises, assuming that the sex ratio problem isn't a problem for the United States, which it might well not be. So, it's a perfect issue to get at the question, how seriously do we worry about allowing a new practice that would have as its point and as its purpose turning child-bearing and procreation essentially into product selection. Not for the good of the child, it's nothing to do with health. The prejudice or the discrimination for healthy over unhealthy children is a perfectly worthy prejudice or discrimination. But the health of the child is not involved here at all, and so it really presents the issue we've been wrestling with in the enhancement discussions in its pure form, and it seems to me if we want to – insofar as we're bothered by a practice that will transform our understanding of children and child-bearing from gift to product, or into objects of our will, here is one. The closest example, comparable case, would be allowing a market, not in organs, but in children. What would be wrong with buying and selling children, provided we didn't allow abuse, we didn't allow enslavement, all of those things, but simply allowing a market in the purchase and sale of children for the same reason. Not because we're afraid that the market would place a higher price on boys reflecting cultural prejudices. That wouldn't be the fundamental reason. The fundamental reason is that it would transform the understanding and the practice of having children and raising children in ways that would, in line with a lot of tendencies already powerful in our culture, transform further in the direction of producing a product or an object of our will. So on those grounds, since there is no compelling reason on the other side. There's no compelling reason of health or of any other kind to allow this kind of technology. It seems to me it's both morally objectionable, and there are good grounds to ban it, but we should ban it by calling it what it is commonly understood to be, sex selection. In fact, it's important if we're going to ban it to call it selection and not control so that it's clear that it's for that reason that we're standing up precisely to the consumerist aspect of this, rather than saying, "Oh no, this is a kind of social authoritarian control." CHAIRMAN KASS: Response to Michael's – a man who's grabbed the bull by the horns and we can now see where we are. DR. MCHUGH: Can I get in there, because that is a wonderful and powerful, but there is – I just want to come back, there is a reason for this alternative, Michael. It wouldn't be done trivially. As I say, I'm working this out myself. You say this is an example, an expression of our manufacture, of our control, our enhancement of our family life. But isn't that a worthy thing? Shouldn't that weigh a little bit on the scales, that a family that has three or four girls might have a boy or three or four boys might have a girl, and that the – you're just really speaking really to the emotional attitudes of the parents themselves that's so uncalculating at one level. They just have a feeling, oh, if only, and I've been in lots of delivery rooms when disappointment was registered at the fact that this is the fifth boy, and I don't know, but you say there's nothing there. I mean, there is something there. That's all I'm saying. PROF. SANDEL: But there's a preference there. I agree there's a preference, but is it a preference to which we should attribute some moral weight, do you think, Paul? DR. MCHUGH: Well, I'm certainly giving it emotional weight, and since I spend most of my time telling people their feelings have too much salience in everything they're doing, I'm arguing against myself today. Don't let my patients know that I've said this. Block it off. CHAIRMAN KASS: It's on the Internet. DR. MCHUGH: It's on the Internet, I know, but I'm just saying that what I'm trying to feel my way along is this idea that there's a deep, heartfelt sense in both parents that they would love to have both boys and girls in their life this way, and that if they could have it, they pray for it, they hope for it. Having a boy and a girl is called the King's Blessing. So – PROF. SANDEL: But then why do you shrink, Paul, from the case from the preferences that people have as a result of what you call social and cultural prejudice? Why not give way to their preferences too? They have a heartfelt desire. DR. MCHUGH: Well, I think that those social preferences, those heartfelt desires are aspects of a culture that needs improvement. CHAIRMAN KASS: Careful. DR. MCHUGH: Yes, I know it's dangerous, but I – PROF. SANDEL: What I'm suggesting is that our culture needs improvement, too, our consumer culture. DR. MCHUGH: Yes, yes, I hear you, sir. CHAIRMAN KASS: Robby. PROF. GEORGE: Paul, I think you get to where you're getting precisely by abstraction, by taking this one element out of a larger picture and abstracted from that larger picture it looks relatively trivial, but you have to see it in context. This kind of social analysis requires that each element of a larger picture be analyzed in relation to the other elements. I think we should ask ourselves why the killing? Why would anybody destroy a perfectly healthy female fetus? Apparently a not insignificant number of people are prepared to do that. Why would they kill a perfectly healthy female infant? Some people are apparently prepared to do that. I think that manifests, it reflects, it's a consequence of our failure to maintain a cultural structure, a public understanding of the child as a gift, precisely as a gift. What happens when you start to treat something as a product, whatever it is? You apply quality controls. When the products don't measure up, the controls have to be put into place. You throw out what didn't measure up and you make new ones that are better. So I think we're already pretty far down the line here. I mean, the cultural understanding has already been eroded to the point where these things can happen. I'm not quite sure how we correct it or rectify it, but I certainly think that we have to see it in context as contributing to an attitude that we really should be trying to overcome. CHAIRMAN KASS: Paul did stipulate for the record that he wanted – he was willing to countenance this only if there was no killing; that this was just the micro sort technique. But you want to say that that's of a piece with these other things? PROF. GEORGE: Yes, let me say this very carefully, because I realize that Paul proposed no killing prenatally, post-natally, no killing of any sort. CHAIRMAN KASS: I want to make sure we clarify this. PROF. GEORGE: No, my problem is not to focus on the particular case, whether it's killing or just sex selection that doesn't involve killing. But to look at the role of sex selection as an element in a general attitude which licenses the designing of children, that sex selection is just one part. If we look at that attitude, why would we think that attitude is a bad thing? What are the consequences of that attitude? Now let's shift the focus back a little bit and look at something that we know is going on already, and is responsible for some imbalance already, and that is killing in the cause of sex selection. Now how can that be? Babies are cute, and ordinarily, a healthy baby, we can't say we're doing an intervention of any kind for the baby in this case, because the baby's perfectly healthy. How can it be happening? Well, it's because, I think, people are already tending to see procreation as the manufacture of a product, and if I don't get what I bargained for, if I'm getting a boy when I wanted a girl, a girl when I wanted a boy, then it's okay to apply the quality controls, shut that one down and redo the process and get what I want. DR. MCHUGH: These are very powerful arguments, and I'm digesting them, and I appreciate just exactly what you're saying, that this kind of commodification and manufacture can be a problem. On the other hand, I think Janet and I together, Janet help me out, are just saying, gee, leave it alone for awhile. See whether in fact it does have the corrupting influence that we have, or whether that we can anticipate, which, I hear your arguments very strongly, Robby, on how it could lead us into all these other things. On the other hand, it's new, a new world, it's new opportunities. Leaving it alone might give us a better picture, just like maybe we got a better picture with IVF or something of that sort. I'm – Listen I'm on thin ice out here fellows. PROF. GEORGE: If I could continue – CHAIRMAN KASS: The trouble is when you get on thin ice, you like to stay there. We've got to be very careful. DR. ROWLEY: Let me just make a few comments here, and I think that we do have to recognize that we are discussing things in the context of the practice in the United States, and I think that it's true that as we watch certain practices elsewhere, one worries whether they might become more common here. I think we do have different cultural values. We aren't an agrarian society dependent on sons to till the fields and so that some of those pressures that lead to sex selection elsewhere are not really so – are not pressing here. I think we also have to have a certain humility ourselves on what our role either on the Council is or trying to set rules and regulations that can affect individuals in ways that we may not foresee. So we're not God, and I think that we have to, as I say, have a certain sense of humility about what our role is. That's, I guess, part of my reason for saying that I'm not sure that this is of sufficient public urgency now that we need to make a judgment, and I agree with Paul, obviously, in the sense that to tell a family that they cannot make a choice if it were available for them to make the choice, and again, I agree with Paul, that it's certainly preferable to do this with no killing involved. For us to say to a family you cannot do it because you are engaged in immoral behavior, I think is very dangerous ground for us to be on, and I commented at lunch time to John Opitz that I thought that his slide from "Non Sequitur" was really quite inspired. One sign, "The facts as they are, the truth as I see it," and I think that a lot of what we're discussing now is the truth as I see it, and I think I'm reluctant to move ahead with that as the basis. CHAIRMAN KASS: Gil. PROF. MEILAENDER: This is just a small question, Michael, with respect to what you were willing to ban, and I mean, you understand that I, of course, am quite sympathetic to the moral argument you put forward, but I just found myself thinking about the kind of case that someone will raise, and let's suppose we're just talking about sperm sorting techniques to accomplish this, and you said it's morally objectionable and I'd be prepared to ban it. Somebody's going to say to you, what about people who want to do this because the mother carries an X-linked recessive disorder, and they want to avoid having a son who has it. Now somebody's going to ask you that question, which, you know, what are you going to say? Are you going to say, no, if we ban it, we ban it, or are you going to say, I'm going to begin to distinguish between circumstances in which I guarantee myself that they are doing this for the morally objectionable reasons, which I don't disagree with you about. How are you going to deal with that sort of question? PROF. SANDEL: I think I would try to make those distinctions. Where it's for a matter of health I would permit it. PROF. GEORGE: I would say that a scheme that did permit it in those kinds of circumstances where health was the concern would substantially alleviate concerns I have about the impact on the public culture and public understanding of procreation. So it seems to me if that's what our fundamental concern is, then it wouldn't necessarily have to be an absolute ban. The ban would be on sex selection as a simple matter of preference. DR. ROWLEY: And are you going to make this a criminal offense? PROF. GEORGE: Do you think that baby-selling should be a criminal offense? DR. ROWLEY: That's a totally different issue. You know, we went through this in the cloning of the slippery slope. Unfortunately, it was Jim Wilson who said, you know, that's not an appropriate argument. So that's a totally different problem, and I think shouldn't cloud the issue. PROF. GEORGE: No, it's not a different problem. It's not a question of the slippery slope, it's a question of the principle. Do we have a principle that children are not commodities that can be treated as products? That's where the similarity is. DR. ROWLEY: Well, I, you see, I don't think that that's so. I think that to give parents a choice of the sex of their children is not to turn that child into a commodity. PROF. GEORGE: Okay, we have a disagreement about that particular point, but – DR. ROWLEY: So this is the "I think, and the facts are." PROF. GEORGE: Well, but let's stay with baby-selling for a moment. We can certainly imagine, Judge Posner has argued in the Wall Street Journal in defense of a scheme of baby-selling. We can certainly imagine circumstances in which an individual couple who wanted a baby of a particular description and could not obtain that baby by adoption except by purchasing that baby, perhaps a purchase in a foreign country of that baby, could bring that baby to the United States and raise that baby in circumstances that are far superior to what that baby might be experiencing in his home country. So the situation for the baby is much improved, and the parents get what they want. Now I would argue that there's still a moral reason, although neither the parent nor the child is harmed in that case, there's still a moral reason having to do with the impact on the public culture of baby-selling for prohibiting the baby-selling. DR. ROWLEY: Now how do you distinguish that from individuals who go to China or to the Ukraine and elsewhere to adopt children? PROF. GEORGE: In the one case, children are being purchased. In the other case, they're not. DR. ROWLEY: And you're so sure that there is no money when children are being adopted from China? PROF. GEORGE: You're asking me whether I'm sure of the question of empirical fact of whether money's changing hands? DR. ROWLEY: Yes. PROF. GEORGE: I don't know, but if money is changing hands, then I think that an immoral transaction has taken place. I wonder if you agree with me. DR. ROWLEY: I don't think it's that simple. I think that for individuals whom I know, and I have no idea whether they paid or not, though maybe as I think about it more, I'd be surprised if orphanages were just giving children away without some kind of remuneration. But I have no idea about this, but if parents cannot have children, and there are children elsewhere whom nobody wants, and most often in China they are girls that are being offered for adoption, I guess I have a hard time seeing that parents should not be able to offer a child a good home and a good life, that that's morally objectionable. PROF. GEORGE: Well, the question is not whether it's objectionable to offer a child a good life; the question is whether it's objectionable to buy the child. DR. ROWLEY: And I'm saying I just wonder whether, in fact, this practice which certainly some individuals are applauding because it has unwanted children now with good homes, whether – I'm asking the question. Whether money changes hands or not. I guess I'm not – I hear – I guess I'm willing to say that the ends of parents who want a child and a child who has no home, getting them together, if some part of that involves the exchange of money, I guess I'm willing to say that the ends justify the means. PROF. GEORGE: Well, that was my only point, that these two cases are on a parallel. DR. ROWLEY: Well – PROF. GEORGE: I think that should be your position if you have the position you have in the other case. DR. FOSTER: I really had no intent to say anything this afternoon, but let me – since there's a lot of discussion going around, and I don't want to get into this discussion. I think that there are situations where there could be exchange of funds for a child that were no direct payments for the child. I mean, for example the number one adoption agency in Dallas, Texas, there is a payment to keep them going. Let's suppose there was an orphanage in Russia or something that you didn't pay a family, but because they're protecting things. I think to make I solely that dollars have changed hands is not either moral or immoral, it depends on how it occurred. My philosophy throughout all of this, I just want to make two points, has always been, I guess, from a person who's a physician, an academic physician, is that I'm very much in favor of things that prevent premature death and help in terms of disease. I thought that that is the reason that I strongly favored what the Council in general said was a lesser good, that is to use cloning for the obtaining of stem cells, and to study this to find out if we could substitute adult cells or whatever, but not put it into a moratorium where we don't get the answer of anything. I felt strongly about that, and I do still feel strongly about that, even though I know that there may be problems there. That issue, and all of us, if we had a fair hearing about that, but that's a momentous issue and was a momentous report, however it came out. I mean, to decide whether you're going to clone to make babies is a momentous issue that forces any council that has an ethical or moral component to act on. That's the case. Now my own personal view is more in view of what we were talking about at lunch today, that I guess Daniel Callahan calls the sacro-symbiotic approach to life and nature, instead of the power-plasticity model, where that everything you could do that you do. I personally would be most comfortable with the whole idea of letting nature be nature, and in a sense that's why I'm pretty much against some of the aspects of enhancement that we're talking about. I mean, I never cared whether I ended up with three boys, but I didn't care about that. I mean, I just think that in general, we ought to be satisfied with those things that are normal and natural and have always been a happy part of life, and then try to change those things that have been negative in life, disease and so forth. Having said that, I think there could be a perfectly innocent thing to want to have a boy or a girl, and if there is ways that somebody could do that, I'm not sure that I would object to that as a general rule of an ethical problem, but what I can say in my view is that it is a trivial ethical problem at this point, and therefore puts us in danger of the concept of taking on things that are not momentous. I would say that pharmacologic enhancement things, those are at least quasi-momentous, but the cloning thing was truly momentous, and I think we ought to limit our ethical recommendations to those things which are serious and are on – even if they have potential wrong. So in this case, I might be, whereas I objected to the moratorium in the first place, because I thought it kept us from answering the question that all of us really wanted to know and where we could've gotten out of any problem of making embryos if it showed that the adult cells and so forth work and so forth. Here I would be willing to have, as Janet and – I hope I'm not getting your cold, Robby. I'm just kidding. I'd be willing at this point, in fact, I would strongly say that this ought to be an issue of moratorium and keep an eye on things that's going on. If we began to see sex ratios coming up, then I think we ought to hop into it very fast, if we still exist, to do something about it. But I'm worried about having this constellation of bright people and so forth being labeled in some sense with not taking care of what I think is a more serious problem of commodification of organs, things of that sort. So my simple point is that I prefer nature as it exists when it's healthy and happy, and see no need to try to make it super-happy, but I am very much in favor, when something goes wrong in nature, that we try to fix that for the larger good. So I think I want to weigh in by saying that I think there's strong reason, despite the potential moral arguments, and I understand that – I mean, I don't like sex selection, but I'm not saying we ought to ban it at this point. CHAIRMAN KASS: The hour is late. Let me make one comment in response to Dan's last, and then to the rest, just simply see if I can sniff out where we are with a view to the future on at least this draft. I would agree, I think, that at least – this doesn't look momentous, I would grant you that. It might be deceptive, however, in not looking momentous, insofar as people like Michael or Robby are right in saying the principle here is established of selection, even if the thing selected seems relatively, not inconsequential, but relatively innocent. In fact, it is an issue which the Brits are now, in fact, having had a stricture against this are now having a public consultation about it. The American Society of Reproductive Medicine is, I think, reconsidering its position. The practice is, I think, on the rise. In the poll that the Genetics and Public Policy Center over at Hopkins took very recently, there's a footnote here, one-quarter of American women and one-third of American men said that they would approve of this, of use of PGD to determine the sex of the child. I don't think, by the way, such a statement is worth very much. I mean, it's one thing to say it to a pollster, and another thing to actually act upon it when you actually have to go to the trouble of doing all of that. I mean, not everybody's going to go have PGD in any case, but I would at least suggest, because there are really two questions here, one is the question of the control issue that has been raised, and the other really is the social consequence question. With respect to the second, it certainly seems to me that the Council could recommend that there be demographic attention to what is happening in the country, and that there be some kind of at least monitoring and reporting of the various clinics that are engaged in this practice, so that we could at least find out the magnitude of the practice and what it's being used for. This simply is a matter of keeping abreast of the practice from the point of view with social consequences. With respect to the moral argument, it may very well be that the proper document of a case study here would not be simply one-sidedly condemnatory, but that one include in here the arguments in favor as well as the arguments against, and in other words, to adapt this draft so that the reasons that have been offered here are, in fact, incorporated, and we'll take this through another draft and allow people to have their comments. In the meantime, be thinking about also, in addition to questions of ban, whether or not this body could exercise some influence, for example, over the American Society for Reproductive Medicine as it considers this policy. Maybe they would like to have, at least, the analytical discussion that we've had here to consider when they meet again and establish some kind of professional self-regulation. I mean, there are lots of things in between saying nothing and having a ban that are appropriate for our discussion. We will try, I think, at the staff, to incorporate as much as we can this really quite rich discussion of this topic in another draft. If people have comments on the draft as it now exists, please let's have them so that the next round will be improved. I think, Bill, did you want to comment before we break, please? DR. MAY: Well, I suppose I don't, like Dan, I don't see it as momentous, because I think, yes, you may have chosen to have a girl, but there's so much unelected in what in fact you get in that girl, that very quickly you learn that parenting is more than willfulness, a willful design. It seems to me there's a comic element in all this that shouldn't be overlooked. I've often thought that women that I've known eventually wanted a girl because they didn't want to end up entirely in the hands of daughters-in-law in their old age. There's all sorts of interesting issues. It's not that they objected to having five sons and so forth, but kind of nice to have a daughter in those later years. All through these meetings, I have spoken on behalf of the gift and beholding instead of excessive molding and so forth, but I think this is one of these cases when the child is born, even though there was that element of choice at the beginning, so much in life would lead to a very different relationship to the parenting experience. So why, I think in the moral – we're not dealing with the moral and the immoral sometimes, but sometimes a good that may be less good than the perfect understanding of something, but one hopes that in the course of the relationship, a more perfect understanding develops as to what parenting entails. CHAIRMAN KASS: As usual, thank you very much. Look forward to seeing you at dinner. We will meet tomorrow again, 8:30. We have guests starting in the early session, so please be prompt. Thank you. |
