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ETHICAL QUESTIONS IN GENETIC COUNSELING

Three factors are combining to complicate the ethics and the law of genetic counseling. The first is the tightening of restrictions on abortion. Great advances have been made in postconception genetic testing, but the objective of most of these determinations is to allow the patient to make an informed choice of an abortion. The second is the publicity surrounding the human genome project. While this project only extends existing work on mapping and identifying the chromosomal basis for hereditary traits and diseases, it has gotten extensive publicity. This is partly because the federal research grant funding this project allocates several million dollars a year for legal and ethical research. This money has created an industry of conferences and articles on the potential societal problems of doing genetic research.[180]

The third factor is a backlash to the medicalization of pregnancy. A primary manifestation of this backlash is the willingness of women to sue their physicians if their baby is born with a defect. Many women interpret the marketing of obstetric services as a guarantee of a healthy baby, and physicians reinforce this message by implying that women who do not follow their recommendations have a greater chance of having a defective baby than women who do what their physicians recommend. This factor is complicated for genetic counseling because society is ambivalent about the proper goals of such counseling. In one author's view, there are three overlapping and conflicting models for genetic counseling: "1) as an assembly line approach to the products of conception, separating out those products we wish to develop from those we wish to discontinue; 2) as a way to give women control over their pregnancies, respecting (increasing) their autonomy to choose the kinds of children they will bear; or 3) as a means of reassuring women that enhances their experience of pregnancy."[181]

Conflicts over genetic counseling and obstetric care span the political spectrum. Conservative religious groups object to abortion, while some radical feminist groups decry high-technology obstetric care as a conspiracy against women. The stakes are high. Few states provide high-quality community care to reduce the burden on families with mentally handicapped children. Financial necessity requires that both parents work outside the home in most families, complicating the care of disabled children. The chance of these children's finding productive work and some level of independence becomes more problematic as American society shifts from a labor- to an information-based economy.

These factors combine to pressure women to strive for the perfect baby, while at the same time creating a sense of guilt for not treating pregnancy as a natural, nonmedical condition. This conflict can take the form of denial and the refusal of indicated testing or a hypersensitivity to risk and the aborting of fetuses with a fair probability of normal development. Physicians must be sensitive to both of these reactions, while carefully documenting the information provided and raising the issue at more than one encounter so that the woman has an opportunity to reconsider her decisions.

[180]Beckwith J: The Human genome initiative: Genetics' lightning rod. Am JL Med 1991; 17:1.

[181]Lippman A: Prenatal genetic testing and screening: Constructing needs and reinforcing inequities. Am JL Med 1991; 17:15.

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