FC April 1 Statement Regarding Genetic Nondiscrimination

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Comments by Francis Collins, M.D., Ph.D.
Director, National Human Genome Research Institute

Regarding Genetic Nondiscrimination Legislation

April 1, 2004

Last October, I sat in the Senate gallery and watched the Genetic Information Nondiscrimination Act of 2003 (S. 1053 [thomas.loc.gov]) pass unanimously (95-0). Senator after senator, from both sides of the aisle, rose to endorse the need for this legislation. Several of them made the point that this is a civil rights issue. That was a seminal afternoon in my career here in Washington, as it showed a real commitment by our leaders to protect the American public from genetic discrimination.

On that same day, President Bush issued a Statement of Administrative Policy in support of the bill expressing the Administration's willingness to work with Congress to see final passage of the bill so that "the Nation [could] fully realize the potential of ongoing advances in genetic sciences." I am here today to help encourage progress in this regard.

The National Human Genome Research Institute and the National Institutes of Health have been working on the issue of genetic discrimination since the very beginning of the Human Genome Project. In 1995, we published recommendations on preventing discrimination in Science magazine, many of which are reflected in S. 1053. We have seen many attempts to draft legislation on this important topic, but this bipartisan bill represents an outstanding effort and successfully addresses the concerns expressed by those of us in the research and health community. Should it become law, S. 1053 will clearly protect all of us with disease-associated misspellings in our DNA - and that's ALL of us -- from genetic discrimination in health insurance and employment.

If this bill doesn't pass, my concern is that we won't be able to realize the full potential of advances in genetic science, because people will be afraid to participate in clinical trials or obtain genetic tests out of fear of discrimination. Most people have not yet had a genetic test, so the opportunity for genetic discrimination has not occurred in most people's lives. But as genetic tests become more widespread, the risk will be quite real. The public, through numerous surveys, has indicated its concern about the potential misuse of their genetic information. For instance, a survey done by the Pew Charitable Trusts indicates that people who may have the opportunity to be tested for various diseases list genetic discrimination as a reason why they might not participate. And I can tell you, based upon research studies going on at the National Institutes of Health (NIH) and elsewhere, that about a third of people who have been offered genetic testing for colon cancer or breast cancer ultimately decide not to participate precisely because they are concerned about discrimination.

Just last month, my own lab at the NIH reported finding variants in a gene that may predispose people to type 2 diabetes, the most common form of the disease. Having this variation appears to increase the risk of type 2 diabetes by about 30 percent. Someone testing positive for this variant could potentially incorporate preventive measures to avoid developing type 2 diabetes. Yet, if such a test is developed some may be afraid to learn their own risks, for fear their insurance company might deny them insurance or raise their rates.

Last April, the Human Genome Project was completed. The next phase of genome research is rapidly moving forward, applying this powerful information about our own DNA instruction book to improve human health. But without protections in place like those outlined in S. 1053, it will be extremely difficult to bring the full benefit of the genome to us all. Furthermore, it will be much harder to solve this problem down the road, after discriminatory practices have already become widespread. I call on the members and the leadership of the House of Representatives to take the same bipartisan stance as the Senate against genetic discrimination - and pass genetic nondiscrimination legislation in the current session.

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Last Reviewed: March 17, 2012