06/19/2008 - When the first federal legislation to prevent the misuse of genetic information was introduced in 1995, many in the health care, research, and policy communities considered the measure to be forward looking. Others called it premature. After all, scientists were just getting ready to start the sequencing of the human genome. Only about 300 genetic tests were available, most of them for rare diseases and usually performed in research settings.
Yet, 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.
Read the full article Keeping Pace with the Times—The Genetic Information Nondiscrimination Act of 2008 on The New England Journal of Medicine's Web site.
Pew is no longer active in this line of work, but for more information, visit the Genetics & Public Policy Center Web site or visit the Genetics and Public Policy Centeron PewHealth.org.