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THE TOUGH QUESTIONS

Some very tough questions arise in the process of genetic counseling or evaluation. The following is an attempt to guide physicians in answering these questions in ways that preserve the patients' rights without embroiling the physician in too many legal and social problems.

Am I the baby's father?
Legally, a child's father is the mother's husband or a man who has been assigned paternity in a court proceeding. Biologic paternity is virtually irrelevant without legal recognition. Courts may choose to transfer legal paternity from one man to another, but they endeavor not to disturb paternity when it will render an otherwise legitimate child a bastard. Physicians should also avoid casting doubts on paternity when a family is already in crisis. While physicians should not lie to patients, there is enough uncertainty about paternity determinations to allow room for differing interpretations. Even tissue typing can be confused by mutation, the presence of related males among the candidates, or laboratory error.

It is best to avoid questions of paternity unless they are directly relevant to the patient's medical condition or care. If the father is concerned about possible genetic disease in his child, the information gathering should be directed to the disease, not the paternity. Physicians should decline to test a child to determine paternity unless it is a medical necessity. (This is usually an issue only for certain rare genetic diseases and as a side issue in tissue typing for organ transplantation.) If a court orders paternity testing, the physician must honor the order. But the physician acting as an expert witness in such a case should inform the court of the limitations of the tests and avoid making any unequivocal pronouncements of paternity.

Can I have a healthy baby with someone else?
This is a very difficult question because the answer is so often yes. A woman who asks this question should be warned that choosing a father at random may be as risky as conceiving with her husband. Artificial insemination is a standard option that allows the woman to avoid genetic disease. But most programs will not inseminate a woman unless she is married and her husband consents. If the woman does not want her husband to know that he is not the genetic father, then she will have to seek help outside the traditional medical care system.

A physician who suspects that a patient is considering such private selection should be sure that she understands the risks. If she is the carrier, she must understand that another father will not alter the risk. If the problem is a recessive disease with a high gene prevalence, such as sickle cell disease or cystic fibrosis, she may have the bad luck to pick a father who is also a carrier. On the other hand, if her husband is the carrier and she is not, her idea is medically sound, if socially questionable. While it is reasonable to try to talk a woman out of seeking a surrogate father, it would violate her privacy to tell her husband. A physician who is uncomfortable with the situation should withdraw from the case. He or she should not try to control the actions of an independent adult.

Should we get married?
Although this is not a medical question, it is one that a physician doing genetic counseling may be asked. The answer for a particular couple will depend on many things: How much do they want children? How great is their risk of genetic disease? How severe is the disease? What are their feelings about prenatal diagnosis and abortion? The birth of a handicapped child is a strain on any marriage and often contributes to divorce. If there are other potential problems, such as family objections or teenage partners, then the risk of divorce is fairly high.

Should we get divorced?
The general understanding of genetic disease is not great. There are people who believe that there is a moral duty to dissolve a marriage if the parties are even distantly related or if there is genetic disease involved. One of the most widely publicized cases involved a biologic brother and sister who were adopted by different families as small children. They met in adulthood, married, and had three healthy children. Another person who knew of their earlier relationship tried to force them to divorce. They quite rightly refused.

Couples should understand the genetic problem they face and the likelihood that children will be affected. Once they understand their options, the parties to the marriage will have to make their own choices. Whatever a physician may advise, strong marriages will tend to survive; weak ones may not.

What should I tell my family?
The best answer to this one is "Nothing." If a couple is considering alternative methods of conceiving a healthy child, such as artificial insemination, or if the couple is going to have prenatal diagnosis and abortion of a defective fetus, they are well advised to tell as few people as possible. If enough people are told, there is certain to be someone who will disagree with the decision out of ignorance or moral outrage. The child may also face ostracism in the family. A grandparent who has a number of biologic grandchildren may not care about a child of artificial insemination. The couple should be counseled to choose their confidants wisely.

If there are other members of the family who may be at risk or are concerned for themselves, they should be encouraged to come to the genetic counselor for their information. Even patients who understand their own problems fairly well can be a mine of misinformation for others. The birth of a child with a congenital defect can stop whole extended families from having children, a tragedy when these other couples may not be at risk.

FERTILITY TREATMENT

Infertility is a condition with unique and profound psychological and emotional impacts. Infertility is experienced by most couples as a life crisis in which they feel isolated and powerless. Feelings of frustration, anger, depression, grief, guilt, and anxiety are common and should be anticipated and dealt with appropriately.[188]

The treatment of infertility poses many controversial issues, ranging from religious objections to questions of fraudulent inducement by unscrupulous fertility clinics that misrepresent their actual success rate.

Infertility treatment has become a big business as the number of couples defined as infertile has increased. Some of this increase is related to the increased age at which many women attempt to conceive their first child. This delay shortens the period available to have children. Women who might have conceived by age 35 if they had begun trying to have children at age 20 are out of time if they start trying to conceive at age 35. Modern birth control methods allow women to be sexually active without becoming pregnant. This increases the probability that the woman will suffer complications of an STD that will impair her fertility. Perhaps the greatest increase in infertile couples has come from a more liberal definition of infertility.

Current statistics indicate that more than 14 percent of couples who desire a child are unable to conceive within a year.[189] It is recommended that fertility treatment not be started (in the absence of a specific problem) until the couple have tried to conceive without using birth control for one year.[190] This is considered a conservative time period and was recommended because some fertility clinics were beginning treatment after only a few months after a couple had begun to try to conceive. In earlier periods, however, a couple would not see themselves as having a medical problem until they had tried to conceive for several years at least. We do not know how many of the 14 percent who did not conceive in a year would eventually conceive without intervention. Thus, it is impossible to determine what component of the infertility epidemic represents changed expectations and the ready availability of fertility services for those able to pay for them.

[188]ACOG Technical Bulletin 125: Infertility. February 1989.

[189]ACOG Technical Bulletin 125: Infertility. February 1989.

[190]ACOG Technical Bulletin 142: Male Infertility. June 1990.



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