U.S. House of Representatives: Committee on Energy and Commerce, RepublicansPrepared Witness Testimony: Slaughter, Louise

Subcommittee on Commerce, Trade, and Consumer Protection
July 11, 2001
12:00 Noon
2322 Rayburn House Office Building

Mr. Chairman, I thank you for the opportunity to testify at this morning's hearing, "The Potential for Discrimination in Health Insurance Based on Predictive Genetic Tests." I am delighted to be here this afternoon with my dear friend and distinguished colleague from Maryland, Rep. Constance Morella, to discuss this pressing health issue.

Two hundred twenty-five years ago, Thomas Jefferson drafted our nation's Declaration of Independence to include the phrase, "All men are created equal." He could scarcely have known that this statement would turn out to be a literal truth, as well as a figurative one. With the completion of the mapping of the human genome, science has revealed to us the fact that human beings are 99.9 percent the same, regardless of race, gender, or nationality.

The remaining 0.1 percent of the human genome accounts for all the human variation we see around us, from eye color to major disability. And while some of us may appear to have been blessed with better genes, none of us has perfect ones. Every person carries between five and fifty genetic flaws that predisposes him or her to a range of disorders.

Over the past few years, entire newsletters, medical journals, and online services have sprung up to cover the advances in genetic medicine. Along with these discoveries, we are seeing a corresponding increase in the number of genetic tests available to Americans. People can now take advantage of genetic tests that will help gauge their risk for breast cancer, colon cancer, and Huntington's Disease. In all, over 800 genetic tests are now available. In time, we expect that new therapies will be developed to target disorders based on our knowledge of the genetic information involved. Scientists will be able to focus treatment on diseases at the molecular level, alleviating side effects and other unintended consequences.

All of this great promise can only come to pass, however, if genetic research can proceed forward unimpeded. Today, the greatest threat to genetic research comes from the potential for genetic discrimination - the misuse or abuse of genetic information.

Today's hearing proposes to address the "potential" for genetic discrimination. Unfortunately, genetic discrimination is not just a theoretical possibility; it is already a reality. For example, in 1997, the New York Times reported the story of a woman who took a genetic test for early onset breast cancer. It came back positive. As a result, she decided to undergo a prophylactic double mastectomy. When she petitioned her insurer to cover this procedure, her request was denied. She then re-submitted her request, sending with it the results of her genetic test, which indicated a dramatically increased risk of cancer. Upon receiving this information, her insurer denied the request again, and canceled her policy.

This story encapsulates Americans' worst fears about the potential abuse of genetic information. As policymakers, however, we must look beyond the anecdotal stories to the fundamental policy issues at hand. In my judgement, genetic discrimination is unfair for three key reasons:

As I stated above, every person has genetic flaws. As a result, we are all potentially uninsurable. By allowing discrimination to persist, we are simply punishing those people with the bad luck to have the genes that were discovered first.

Having a given gene does not necessarily mean one will ever get sick. A genetic mutation only confers a higher - or lower - level of risk.

Our understanding of genetics is in its infancy. In most cases, we do not have a solid grasp of what it means to have a particular genetic mutation, or how much risk is elevated. As a result, this information is useless as a basis for decisions about insurance coverage or premiums.

By banning genetic discrimination, we are simply asking insurers to continue covering the exact same people, under the exact same conditions, they are covering today.

Any Congressional effort to ban genetic discrimination should adhere to four fundamental principles:

It should ban discrimination in both health insurance and employment. If our goal is to make the American people comfortable in taking a genetic test, we cannot ban genetic discrimination in just one area or the other.
It should contain strong provisions prohibiting the collection and disclosure of predictive genetic information without informed consent. Predictive genetic information should be a matter of privacy, not a matter of commerce.
It should protect all forms of predictive genetic information, including family history. Much of our predictive genetic information comes from our knowledge of the disorders that run in our family. People need to be comfortable discussing this information with their health care providers and having it in their medical records.
It should contain meaningful enforcement and remedies. It is not enough for Congress to pass a law but not punish violations. The abuse of genetic information represents a fundamental violation of an individual's person. It should be treated as such.

Representative Morella and I believe we have the legislative solution to genetic discrimination. We are proud to sponsor H.R. 602, the Genetic Nondiscrimination in Health Insurance and Employment Act. This bill has the support of well over a majority of the House of Representatives, as well as hundreds of outside organizations. We hope the Energy and Commerce Committee will act to pass H.R. 602 as quickly as possible.

Once again, Mr. Chairman, I thank you for the opportunity to testify here today. Representative Morella and I look forward to working with you ensure that social policy keeps pace with science, and Congress passes a strong, meaningful genetic nondiscrimination law.

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