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

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

Regarding the Passage of Genetic Information Nondiscrimination Act of 2005 (S. 306)

February 17, 2005

I congratulate the members of the Senate who have worked so diligently to pass the Genetic Information Nondiscrimination Act of 2005. As you know, the Senate also passed an identical bill in October 2003, but I am very hopeful that it will make it through the entire legislative process this year and the President, who has previously indicated his strong support, will be able to sign it into law. We need this legislation now more than ever.

Since the completion of the Human Genome Project in 2003, we have seen a crescendo of advances in medical research. We have seen the development of new diagnostic tests, preventive strategies, and treatments for genetically based diseases. I am concerned, however, that this progress will be greatly hampered if the American people do not feel comfortable obtaining genetic information about themselves.. S. 306 will clearly protect all of us from genetic discrimination in health insurance and employment, and would free the American people from the fear of such discrimination.

As I said in 2003, this issue has universal implications. In fact, this bill could just as well be known as the bill to protect people with DNA. That would be all of us! Since all of us have dozens of genetic glitches that put us at risk for disease, we all have a reason to be concerned about the possible misuse of genetic information.

No one should lose their job because of the genes they inherited. No one should be denied health insurance because of their DNA. But genetic discrimination affects more than jobs and insurance. It also slows the pace of science. We know that many people have refused to participate in 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, thus further compromising research.

This bill would not have passed the Senate without the outstanding leadership of Majority Leader Frist, and we are sincerely grateful for his determination to see this happen. We also know that we would not have achieved this milestone today if Senator Snowe had not introduced this bill and Senator Enzi had not had the determination to move it through the HELP committee as one of his first orders of business. I'd also like to point out the great work of Senators Kennedy, Jeffords, and Harkin, who have been working on this legislation for many years. The ongoing bipartisan involvement of many members of the Senate has been key to today's success. Finally, Senator Gregg also deserves enormous credit as the former Chairman of the HELP committee. He worked tirelessly to see this bill move forward.

This is a momentous day, but there is still a great deal more work to be done. Thank you, members of the Senate, for all you have done to protect Americans from genetic discrimination.

Last Reviewed: February 4, 2012