Keeping Pace with the Times — The Genetic Information Nondiscrimination Act of 2008 (NewEngJourMed)

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Keeping Pace with the Times — The Genetic Information Nondiscrimination Act of 2008
Kathy L. Hudson, Ph.D., M.K. Holohan, J.D., and Francis S. Collins, M.D., Ph.D.

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...anticipating an explosion in the clinical relevance of genetic testing and sensing Americans' growing concern that their genetic information could be used against them by health insurers and in the workplace, we and many others became convinced that reforms were needed as soon as possible.1,2 Little did we know that "as soon as possible" would mean a 13-year legislative saga that culminated on May 21, 2008, with President George W. Bush's signing of the Genetic Information Nondiscrimination Act (GINA) of 2008. At last, the United States has a federal law that protects consumers from discrimination by health insurers and employers on the basis of genetic information (see Quick Guide to GINA).

In the years between GINA's inception and its enactment, genomic information has grown exponentially, revolutionizing nearly all areas of biomedical research and, many believe, promising an eventual transformation of health care. Researchers completed the reference sequence of the human genome in April 2003 and went on to produce a map of human genetic variation that has greatly accelerated the search for genes involved in susceptibility to common diseases. Genetic tests now encompass more than 1500 conditions, with most of the growth in the area of common diseases. With many of these tests becoming available in the clinic and some even being offered directly to consumers, GINA's protections could no longer be dismissed as premature; they were rapidly coming to seem essential to Americans' ability to make the most of the much-anticipated era of personalized medicine.

Still, in a policy system that may be better suited to responding to crises than promoting prevention, legislators are rarely in an optimal position to act on the potential effects of emerging technologies. Thanks to the efforts of key lawmakers, their staffs, and advocates such as the Coalition for Genetic Fairness, GINA eventually garnered overwhelming bipartisan support in the current Congress. One silver lining of GINA's slow progress through Congress is the many opportunities it offered to educate policymakers about the potential of genomic medicine and the challenges that must be addressed if we are to realize that potential.

"GINA is the first major new civil rights bill of the new century," said Senator Edward Kennedy (D-MA), who cosponsored GINA in the Senate with Senator Olympia Snowe (R-ME). "Discrimination in health insurance and the fear of potential discrimination threaten both society's ability to use new genetic technologies to improve human health and the ability to conduct the very research we need to understand, treat, and prevent genetic disease," said Kennedy.

Source Information

Dr. Hudson is director of the Johns Hopkins Genetics and Public Policy Center, supported by the Pew Charitable Trusts, in Washington, DC. Ms. Holohan is a senior health policy analyst at, and Dr. Collins is director of, the National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.

The New England Journal of Medicine is owned, published, and copyrighted © 2008 Massachusetts Medical Society. All rights reserved.

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http://content.nejm.org/cgi/content/full/358/25/2661?query=TOC