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Guest Commentary: August 25, 2001
Genetic Discrimination Is Already Reality
...and Should Be Banned
The Honorable Louise Slaughter
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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. We can anticipate a new way to provide health care at less cost, and with fewer long hospital stays.
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. ...
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 is just one of dozens of cases.
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.
Note: The above commentary has been adapted from comments Rep. Slaughter made at a hearing of the House Energy and Commerce Subcommittee on Commerce, Trade and Consumer Protection, July 11, 2001.
 How to contact Rep. Louise M. Slaughter (D-NY)
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