March 27, 2001

"Good afternoon and welcome to the our second hearing of the Senate Biotechnology Caucus - The Human Genome: Future Implications for Patients. I'd like to begin by complementing my co-chair Senator Tim Hutchinson on his foresight in recognizing the need for this caucus. Members of Congress are bombarded every day with a dizzying array of headlines about the revolution in biotechnology - from 'golden rice' to 'killer corn' to 'human cloning' to 'breaking the genetic code.'

Sifting through the facts and figuring out how to ensure that our public policy keeps pace with advances in science is no easy task. That's why I was so pleased that Senator Hutchinson asked me to join him in co-chairing this caucus - which is designed to be a forum for discussing issues related to biotechnology and its implications in an open and bipartisan way.

I'd like to also thank our witnesses for taking the time to be with us today and for sharing their expertise with us. I want you to know that it is possible that I may be called away to the floor since I am one of the managers of the campaign finance bill. But, Senator Hutchinson will still be here and Senators Kennedy and Harkin may be participating as well.

So that we can spend the majority of our time today hearing from you, I will be brief in my comments.

I'm sure many of you share my sense that science fiction is becoming reality - doctors can now scan our unique genetic blueprints and predict the likelihood of our developing diseases such as cancer, Alzheimer's or Parkinson's.

We all hope that, armed with this knowledge, we can make informed decisions about our health care - in some cases, that we can even take steps to prevent the disease or to detect and treat it early.

The downside to this explosion of information is the fact that science has outpaced the law. Americans are worried, and rightly so, that their genetic information will be used - not to improve their health - but to deny them insurance or employment.

And, in fact, recent events have catapulted the issue of genetic discrimination from a potential concern to a devastating reality. Just last month, the U.S. Equal Employment Opportunity Commission filed a lawsuit against an employer for requiring genetic testing of employees who file injury claims. Additionally, a recent survey of over 2,000 companies conducted by the American Management Association showed that 18.1% of the companies required genetic or medical family history data from employees or job applicants. According to the same survey, 26.1% of the companies that require genetic or family medical history tests use the results of those tests in hiring decisions.

In my view, it is absolutely critical that Congress act quickly to ensure that the benefits of advances in genetics are not outweighed by the potential for misuse, abuse and discrimination.

I am a cosponsor of legislation introduced by Senator Daschle which would safeguard the privacy of genetic information and prohibit health insurance or employment discrimination based on genetic information. Specifically, this legislation would prohibit health insurers from discriminating based on genetic predisposition to an illness or condition and would prevent insurers from requiring applicants for health insurance to submit to genetic testing.

This bill would also address concerns about employment discrimination by preventing employers from firing or refusing to hire individuals who may be susceptible to a genetic condition. Finally, this legislation holds employers and insurers accountable by imposing strong penalties those who violate these provisions. I am pleased to note that a companion bill has been introduced in the House by bipartisan cosponsors - Congresswoman Slaughter and Congresswoman Morella.

In my view, This issue is too important to ignore for yet another year. Each day that passes more individuals suffer discrimination. Each day that we fail to act, more families will be forced to make decisions about genetic testing based, not on their health care needs, but on fear.

I pledge my commitment to ensuring that continued progress in science is matched by progress in creating protections against discrimination and establishing fundamental rights to privacy."

See Photos from the Biotech Caucus Hearing