June 7, 2001

"Over the past decade, the science of genetics has developed at an astonishing pace. For an increasing number of Americans, science fiction has become reality -- their doctors can now scan their unique genetic blueprints and predict their likelihood of developing diseases like 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 may even take steps to prevent the disease or to detect and treat it early.

I am particularly proud of the contribution of Connecticut's biotechnology community in advancing our scientific understanding and growing the possibilities for health care treatment.

And as a longtime child advocate, I am heartened at the prospect of preventing or curing devastating diseases like cancer or diabetes for our nation's children.

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.

As you have heard today, recent events have catapulted the issue of genetic discrimination from a potential concern to a devastating reality. David Escher's experience with his employer, the Burlington Northern Santa Fe Railway Company, is a chilling illustration of how our new capabilities can be abused.

It was not until both the U.S. Equal Employment Opportunity Commission and the Brotherhood of Maintenance of Way Employees brought suit that the company agreed to suspend genetic testing for employees filing work-related injury claims -- testing that was being done without the consent or knowledge of these employees.

Unfortunately, this case may not be an anomaly. A new survey of over 1,500 companies conducted by the American Management Association showed that over one-fifth (20.1%) of the companies required genetic or medical family history data from employees or job applicants.

According to the same survey, more than a quarter (27.3%) of the companies that require genetic or family medical history tests use the results of those tests in hiring or other employment 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. That is why we must take this issue up in our Committee over the next few weeks and then on the Senate floor.

I am proud to be an original sponsor of this legislation to safeguard the privacy of genetic information and prohibit health insurance or employment discrimination based on genetic information. I applaud Senators Daschle, Kennedy and Harkin and Congresswomen Slaughter and Morella for their leadership on this issue. And I am always impressed by the tireless commitment of all of our advocacy groups on this issue.

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."