Mr. President, it's a privilege to join Senator Frist, Senator Enzi, Senator Gregg, and Senator Bingaman in introducing the Foundation for the National Institutes of Health Improvement Act. Our bill…
Mr. President, it's a privilege to join Senator Frist, Senator Enzi, Senator Gregg, and Senator Bingaman in introducing the Foundation for the National Institutes of Health Improvement Act.
Our bill makes several improvements in the 1990 law that established the Foundation. Most significant, it assures the Foundation at least $500,000 annually from the NIH to support its administrative and operating expenses. These funds will enable the Foundation to use its own resources for the actual support of projects to strengthen NIH programs, rather than raise money for its own expenses. As the bill makes clear, the NIH Director and the Commissioner of Food and Drugs are ex officio members of the Foundation's board of directors.
Congress established the Foundation to raise private funds to support the research of the NIH. For every dollar the Foundation received from the NIH in 2003, it raised $426 in private funds. Since its creation, the Foundation has raised $270 million, or $68 in private support for every dollar from the NIH.
The Foundation is currently managing 37 programs supported by $270 million generated from private contributions. For example, the Edmond J. Safra Family Lodge on the NIH campus gives families of patients receiving in-patient treatment at the NIH Clinical Center a place to stay, at no cost to them.
In addition, the Foundation has formed partnerships with the NIH to develop new cancer treatments, to identify biochemical signs of osteoarthritis and Alzheimer's Disease, and to build on the promise of genomics. Through a public-private partnership, the Foundation helped accelerate the sequencing of the mouse genome. The Foundation is also collecting private funds to study drugs in children. In 2003, Bill Gates announced a gift to the Foundation of $200 million over the next 10 years to support research on global health priorities. Clearly, the Foundation's partnership with the NIH will grow productively in the coming years.
I urge my colleagues in the Senate to support this legislation, so that the Foundation can continue its effective support of the work and mission of the NIH.
I ask unanimous consent that the text of the bill be printed in the Record.
Mr. President, it is a privilege to join Senator Snowe, Senator Prist, Senator Gregg, and Senator Enzi in introducing the Genetic Information Non-Discrimination Act. Today we take another step in our national journey to a fairer and more just America.
I particularly commend our colleague from Maine, Senator Snowe, for her dedication to this vital issue. Senator Snowe first proposed legislation on genetic discrimination in 1996. Hopefully, the bipartisan momentum we have built up in recent years will produce a consensus bill we can enact into law this year.
Two years ago, we celebrated an accomplishment that once seemed unimaginable--deciphering the entire sequence of the human DNA code. This amazing accomplishment will affect the 21st century as profoundly as the invention of the computer or the splitting of the atom affected the 20th century. But the extraordinary promise of science to improve health and relieve suffering is in jeopardy if our laws fail to provide adequate protections against misuse of genetic information.
Our bipartisan legislation prohibits health insurers from using genetic information to deny health coverage or raise premiums. It bars employers from using genetic information to make employment decisions.
Few kinds of information are more personal or more information than a person's genetic makeup. This information should not be shared by insurers or employers or be used in decisions about health coverage or a job. It should only be used by patients and their doctors to help them make the best possible decisions on diagnosis and treatment.
Breakthroughs in genetic science are bringing remarkable new opportunities for improving health care. But it also carries the danger that genetic information will be used as a basis for discrimination. I hope we can all agree that discrimination on the basis of a person's genetic traits is as unacceptable as discrimination on the basis of race or religion. No American should be denied health insurance or fired from a job because of a genetic test.
The vast potential of genetic knowledge to improve health care may go unfulfilled, if patients fear that information about their genetic characteristics will be used against them. Congress has a responsibility to guarantee
that genetic information remains private and is not used for improper purposes.
Experts in genetics are united in calling for strong protections to prevent this misuse and abuse of science. The HHS advisory panel on genetic testing--with experts in law, science, medicine, and business-- recommended unambiguously that Federal legislation is needed to prohibit discrimination in employment or health insurance based on genetic information. Last fall, witnesses testified about their first hand accounts of genetic discrimination. Heidi Williams' children were denied health insurance because they were carriers for a genetic disorder. Phil Hardt's children feared discrimination so much that they sought genetic tests in secret, paying out of their own pockets and not using their real names.
Francis Collins, the leader of the NIH project to sequence the human genome, said, ``Genetic information and genetic technology can be used in ways that are fundamentally unjust. Already, people have lost their jobs, lost their health insurance, and lost their economic well-being because of the misuse of genetic information.''
Genetic tests are becoming even cheaper and more widely available. If we don't ban discrimination now, it may soon be routine for employers to use genetic tests to deny jobs to employees, based on their risk for disease.
When Congress enacts clear protections against genetic discrimination in employment health insurance, all Americans will be able to enjoy the benefits of genetic research, free from the fear that their personal genetic information will be used against them. If Congress fails to see that genetic information is used only for legitimate purposes, we will squander the vast potential of genetic research to improve the Nation's health.
Effective enforcement will be essential. It makes no sense to enact legislation giving the American people the promise of protection against this form of discrimination and then deny them the reality of that protection.
President Bush recognizes the seriousness of this problem, and supports a ban on genetic discrimination. In his words, ``genetic information should be an opportunity to prevent and treat disease, not an excuse for discrimination. Just as our Nation addressed discrimination based on race, we must now prevent discrimination based on genetic information.'' I commend the President for his support, and I look forward to working with the administration to see that a strong bill on genetic discrimination is signed into law this year.
It is time for Congress to act, and I urge the Senate to do so without delay.