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Assessing Genetic Risks: Implications for Health and Social Policy
Recognition of Human Diversity and Respect and Tolerance for People with Disabilities
The committee heard powerful and moving testimony from individuals with disabilities who believe that genetic testing and the consequent increase in abortion promote the premise that individuals with disabilities (whether tests exist for early detection or not) have less intrinsic worth. They pointed out that many people with disabilities lead full and productive lives and that society's negative view of disabilities is sometimes of greater harm to them than the disabilities themselves (Waxman, 1992). Some people with disabilities would resist any expansion of genetic testing. The committee recognizes the weight of these concerns and urges broad public education to dispel myths about people with disabilities—genetic or otherwise—and to reduce barriers to their participation in society (see Chapter 5). The committee rejects the notion of restricting any expansion of genetic testing based on the concerns of persons with disabilities that the technologies are inherently harmful. Such a restriction would undermine individual autonomy as much as the view that people should be urged or forced to use genetic tests and abortion to prevent disabilities. Nevertheless, the concerns of persons with disabilities are critical ones for our society. The committee is concerned that society may be moving closer to adopting the view that people should be urged or forced to use genetic tests and abortion to prevent disabilities; steps must be taken to counteract this tendency by decreasing pressures to test and increasing education and understanding of disabilities. If testing becomes widespread, efforts to urge people to undergo genetic testing might engender a greater intolerance for persons with disabilities—even though most disabilities are not the result of genetic causes. Avoiding the social pitfalls of intolerance based on genetic testing will require continuing vigilance.
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