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Assessing Genetic Risks: Implications for Health and Social Policy
Relationship Between Genetic Testing and Abortion. Rational discussion of this sensitive issue is critical and must be based on facts and options, and not merely on values or opinions. In recent years, there has been a pervasive trend to separate abortion from the discussion of genetic testing. For example, all direct reference to abortion was deleted just prior to publication of educational materials for participants in the California maternal serum alpha-fetoprotein (MSAFP) screening (Cunningham, 1992). Avoiding discussion of abortion makes it impossible to consider the full implications of prenatal genetic testing and the range of choices available to parents. Discussion of abortion—as with other sensitive matters related to reproduction—often arouses strong reactions in local schools and communities. Nevertheless, awareness of the possibility of abortion among the considerations that follow genetic testing is an essential part of informed consent for any such testing (see Chapters 4 and 8).
Sensitivity to Genetic Disadvantage. James Watson (1992), co-discoverer of the structure of DNA and founding director of the National Center for Human Genome Research, offered this analysis of genetic disadvantage:
Some people get a bad start in life because they are born into poverty, and some people get a bad start in life because they are born with a bad set of genes. The function of a compassionate society is to deal with both kinds of inequality.
Formal biology education typically emphasizes gene states, using terms such as "mutant" and "abnormal" to describe the genes involved in disease conditions. Sensitivity to the challenges and problems of genetic disorders includes care in the use of language (Lippman, 1992) and the avoidance of dehumanizing terms. This is the context in which basic concepts of variety and kinship can help to reduce the stigma associated with genetic disorders.
Genetics of Complex Disorders. In addition to understanding variety and kinship, the public will need to develop an understanding of the role of both genetic and environmental factors in complex disorders such as heart disease and some cancers. Although genetic factors are being identified in many common diseases of late onset, they often require environmental interaction to produce disease. This additional public perspective on genetics is essential to help dispel concepts of determinism that overemphasize the role of genetics in health behavior.
The Human Genome Project's Ethical, Legal, and Social Implications Program has funded the development of two television series intended to contribute to this public dialogue. One project, coordinated by the WGBH Educational Foundation in Boston, produced eight one-hour programs for release in 1993 through the Public Broadcasting System. These programs are designed to prepare viewers for informed participation in public debate; it will try to make molecular biology intelligible, moving beyond sensational headlines to illustrate the molecular revolution in biology and medicine, and explore the social issues raised by advances in molecular biology. A second project by WNET in New York aired one