Last updated: March 16, 2012
Statement on the Senate's Passage of the
Genetic Information Nondiscrimination Act of 2003
Dr. Francis S. Collins
Director, National Human Genome Research Institute
National Institutes of Health
Department of Health and Human Services
Oct. 14, 2003
In 1995, the National Human Genome Research Institute at the National Institutes of Health convened a working group to discuss the issue of genetic discrimination. That group published recommendations on preventing discrimination, many of which are reflected in this bill. 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 we in the research and health community have had. Should it become law, S. 1053 [thomas.loc.gov] will clearly protect all of us from genetic discrimination in health insurance and employment.
No one should lose his job because of the genes he inherited. No one should be denied health insurance because of her DNA. But genetic discrimination affects more than jobs and insurance. It slows the pace of science. We know that many people have refused to participate in genetic research for fear of genetic discrimination. This means that without the kind of legal protections offered by this bill, our clinical research protocols will lack participants, and those who do participate will represent a self-selected group.
Last April, with the completion of the Human Genome Project, the genomics community released A Vision for the Future of Genomics Research. The primary focus of this document was a plan for translating genomic research into health applications. Without protections in place like those outlined in S. 1053, this vision may not be realized because of the public's fear of taking advantage of these advances. Today, at the dawn of the genomic era, is the ideal time to pass this legislation and get it onto the President's desk for his signature.
- White House Office of Mangement and Budget (OMB) Statement [whitehouse.gov]