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Assessing Genetic Risks: Implications for Health and Social Policy
obstetrics and gynecology related to genetics. Many disease-specific specialty organizations also have a strong interest in the rapidly developing field of genetic testing related to their disciplines and disorders (e.g., oncology, cardiology, diabetology). The development of an international code of ethics for geneticists has also been proposed (Wertz, 1992).
Genetic testing has moved beyond the domain of genetics specialists alone however. Beyond the role of professional bodies, therefore, the committee recommends broad public involvement in the development of public policy and professional practice concerning genetic testing and screening. As discussed throughout this report, genetic testing has broad health and social implications of both immediate and future concern to individuals and families with genetic disorders, genetic support groups, and the public at large. The Alliance of Genetic Support Groups has played an important role in coordinating and informing such support groups and, increasingly, in representing their interests in policy discussions. Most recently, the Alliance, in conjunction with ASHG, held a workshop and developed important guidelines for informed consent in research involving genetic testing (see Chapter 4).
Beyond the role of genetic support groups, there is a need for increased public awareness, understanding, and participation in the development of policy for genetic testing. Increased public education will be required to equip the public to make informed personal and policy decisions in genetic testing (see Chapter 5).
National Advisory Committee and Working Group
The committee deliberated at length about the best way to proceed in this complex professional and public policy climate and considered a variety of mechanisms for accomplishing the goals of technical and policy oversight. Some members felt that the existing Joint Working Group on the Ethical, Legal, and Social Implications (ELSI) of the Human Genome Project could serve as the needed oversight body if it had a more formalized mandate, along with expanded staff and funding. (The ELSI program has already supported consensus conferences to help to develop policy statements on issues such as CF screening, p53 screening for cancers, the implications of presymptomatic identification of late-onset genetic disorders in relation to implementation of the Americans with Disabilities Act, and research guidelines for large family studies in genetics.) In contrast, some members felt that overall policy oversight for genetic testing would be best provided in the context of a broader body overseeing biomedical ethics generally.
The majority of the committee recommends a broadly based, continuing, independent National Advisory Committee on Genetic Testing to provide policy advice and oversight for genetic testing, in conjunction with a Working Group on Genetic Testing to provide a forum for gathering and disseminating data—both scientific and social—to help develop common principles