Senator Ted Kennedy In Support Of Genetic Information Nondiscrimination Bill

(As Prepared for Delivery)

April 24, 2008 -- Today, the Senate is considering the first major new civil rights bill of the new century. Five years ago this week, we celebrated a milestone that once seemed unimaginable – the completion of the Human Genome Project, which sequenced and mapped all of the genes in the human body. This Friday is “DNA Day,” when we pay tribute to this amazing accomplishment, which was the dawn of a new era in the life sciences.

Mapping the human genome has provided extraordinary insights for modern medicine, and has opened the door to immense new opportunities to prevent, diagnose, treat, and cure disease. Its discovery may well affect the 21st century as profoundly as the invention of the computer or the splitting of the atom affected the 20th century.

But with this invaluable new information comes a tremendous responsibility. A person’s unique genetic code contains the most personal aspects of their identity. As we begin to decipher this information, Americans have legitimate fears about how this deeply private information will be used.

Surveys show that people are already declining to take medically valuable tests, out of fear that they will face discrimination or invasions of their personal privacy.

These fears are not unwarranted. As Francis Collins, the leader of the NIH project to sequence the human genome, has 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.”

The remarkable medical advances of the genetic age will be valuable only if people are not afraid to take advantage of them. The promise of this new science will be in jeopardy, if our laws fail to contain adequate protection against abuse and misuse of genetic information.

The bipartisan bill now before the Senate takes a substantial step to preserve the value of new genetic technology and protect the basic rights of every American. The Genetic Information Nondiscrimination Act recognizes that discrimination based on a person’s genetic identity is just as unacceptable as discrimination on the basis of race or religion. No American should be denied health insurance or be fired from a job because of genetic testing.

The bill before us provides comprehensive protections. It prohibits health insurers from using a patient’s genetic information to deny health insurance coverage or raise premiums. It bars employers from using genetic information to make employment-related decisions. It prohibits insurers and employers from seeking genetic information or requiring individuals to take genetic tests. It bars disclosure of genetic information by insurers or employers. And it contains effective remedies so that anyone who has suffered genetic discrimination can obtain relief.

By granting these protections, the bill gives the American people the opportunity to reap the rewards of improved health care through genetics, without fear of unjust use of their personal genetic makeup.

This bill has been the product of a decade of dedicated effort by members on both sides of the aisle. My sincere thanks go to Senator Snowe and Senator Enzi for helping to lead this bipartisan effort with me, and to Senator Reid and the Senate leadership for their commitment to moving this bill forward. Senator Gregg, Senator Dodd, and Senator Harkin also made important contributions through their leadership and expertise. I also commend our House colleagues, Speaker Pelosi, Representatives Slaughter and Biggert, and Chairman Miller, Chairman Rangel, and Chairman Dingell for their strong support.

It’s a remarkable achievement to get this bill to the President’s desk. The Administration cooperated with us throughout this process, and we’re grateful for its support of this important legislation.

We stand today on the threshold of a major new breakthrough in medical technology. With the personalized medicine that genetic science makes possible, patients can receive therapies precisely tailored to their own genetic makeup, with reduced side effects and greater potency. But the effectiveness of these new technologies is undercut by people’s legitimate fears and the lack of strong legal protections.

We know there are numerous barriers to new discoveries that Congress can do little about – the complexities of disease, the uncertainties of science, the rarity of true inspiration. But this is one major problem that is entirely within our power to solve. We can make a difference, and we can do it today.

With effective protections against misuse of genetic information, this amazing new technology can realize its potential and bring better healthcare to all people throughout our world. I hope that all of my colleagues will join in advancing the potential of genetic research, by supporting the Genetic Information Nondiscrimination Act.

Source: Senator Ted Kennedy

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