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June 9, 2015

Why the Americans With Disabilities Act Matters for Genetics

Author Affiliations
  • 1Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tennesse
JAMA. 2015;313(22):2225-2226. doi:10.1001/jama.2015.3419

The Americans with Disabilities Act (ADA) is arguably the most effective law in the United States protecting people from misuse of genetic information. Before discussing how this law works, it is necessary to understand why addressing concerns about genetics is important. The genome is frequently portrayed as particularly powerful in predicting health and disease, even going to the essence of what it means to be human. As a result, many people understandably fear that this type of information will be misused to deny them access to goods such as jobs and health insurance. Evidence, based largely on anecdotes and survey responses, suggests that these concerns lead some people to avoid useful genetic tests, raising concerns about whether the potential value of genomics research for human health will be fully realized. Yet in deciding what information should trigger protection, it is difficult to know where to differentiate between “genetic” and “nongenetic” because even though many genetic variants have little or no apparent effect on human characteristics, virtually every human trait has some genetic contribution.

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