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Genetic Discrimination: Why Is Nothing Happening in the House?

March 17th, 2005 | Paula Brantner

If you observe the U.S. Senate at all these days, you know it’s a very fractured and partisan institution, with hardly anyone agreeing on anything, much less bills that benefit workers. So it may surprise you to learn that the Senate recently passed a civil rights bill with a 98-0 vote. The Genetic Information Nondiscrimination Act, as the Senate and even the President have recognized, is a legislative no-brainer: people need protection against use of their genetic information for purposes of discriminating against them. So why won’t the House of Representatives pass this bill?

What if you could take a test which would identify whether you were genetically predisposed towards such genetically-linked diseases as cancer and diabetes? Before you take the test, however, you’re told that the information disclosed in the test results might make it impossible for you to get insurance in the future, and could affect whether an employer will hire you, given the potential future impact on company health insurance rates. Many would choose not to take the test, despite the obvious medical benefits from doing so, given the serious consequences that could result from the disclosure of the information.

That is why the Genetic Information Nondiscrimination Act (S. 306/H.R. 1227) is needed. The bill would bar health insurance companies from using genetic information to deny coverage or to set premiums, and would prohibit employers from using such information to hire or fire workers. Neither insurers nor employers could ask for genetic information or require people to take genetic tests. This protection would help ensure that workers who take steps to learn more about their genetic composition will not be penalized for doing so. As a recent editorial in American Medical News, a publication for physicians, points out, “How useful can a test be if many of the patients who would benefit from it are too afraid to take it?” (See AMNews Editorial.)

In case anyone questions whether this fear is genuine, the Coalition for Genetic Fairness, an alliance of civil rights, health care, and patient groups, released last summer Faces of Genetic Discrimination, which tells the story of those who have already encountered genetic discrimination in insurance and employment. Typical of the stories told is the story of Kim, a social worker with a human services agency.

Kim…was fired because of her employer’s fears about her family history of Huntington’s disease. During a staff workshop on caring for people with chronic illnesses, Kim mentioned that she had been the primary caretaker for her mother, who died of Huntington’s disease. Because of her family history, Kim had a 50 percent chance of developing the disease herself. One week later, despite outstanding performance reviews, Kim was fired from her job.

As more and more scientific advances are reported, the number of available tests to detect genetic dispositions toward particular diseases is certain to increase. The value of those tests in prompting lifestyle changes and/or initiating preventative medicine cannot be emphasized enough. As one commentator points out,

Knowing more about one’s risk is good because it offers the opportunity to counterbalance one’s genetic risk with lifestyle and dietary changes, which can offset genetic risk. A widely quoted axiom states that, for most diseases, genetics accounts for 1/3 of the overall risk, with dietary, lifestyle, and environmental factors accounting for the remaining 2/3 of the risk.

(See MyDNA.com) However, if the people choosing to take the test know that as a result, they could become unemployable and uninsurable, then it is truly a case of “ignorance is bliss.”

In 2003, when the Senate passed this bill 95-0, the House refused to act. Given the unanimity of the Senate, and the President’s support (see LA Times editorial), it’s inexplicable why the House refuses to act, or even allow the bill to be debated. Who could oppose such a necessary and straightforward bill? Say it in a “Church Lady” voice: Could it be Satan? (I mean big corporations and insurance companies?)

This is the kind of issue that will hopefully never affect the vast majority of people negatively. However, it’s easy to see how it can wreak financial devastation in a certain number of people. And we shouldn’t underestimate its reach. As Dr. Francis Collins, head of the National Human Genome Research Institute, has characterized the bill, it’s “a bill for people with DNA,” which of course, is a bill for all of us.

Take Action Now: Support a Vote on the Genetic Information Nondiscrimination Act

More Information:

National Partnership for Women and Families: Genetic Discrimination Page
The Arc: Genetic Issues in Mental Retardation
National Human Genome Research Institute: Genetic Discrimination Fact Sheet
Nolo Press article: Of Genes and Pink Slips: Genetic Testing Goes to Work

News Articles:

Reuters: Senate Passes Ban on Genetic Discrimination
American Medical News: Senate bill aims to ease fear of genetic testing
KSL-TV5: Genetic Research Advances Create Ethical Dilemma

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