Two views on genetic discrimination legislation

Q: Would you have any qualms about undergoing genetic testing in the current environment?

A: Yes, I would. If I were in a situation where I was confident that a particular genetic test was highly indicated and where the results might give me the information that could provide me with an opportunity to reduce my risk, I would be very interested in the test, but I would have to weigh that against the likelihood that this could result in damage to my employability or to my ability to get health insurance. And that would be a serious factor. I would not take that lightly. I do think the risks, while not huge, are real, and until we have a circumstance where that is effectively outlawed by well-written federal legislation, I would be quite uneasy.

This from a recent interview of Francis Collins by American Medical News.  Following the text of the interview is a brief discussion of alternative options, such as working on legislation at the state level instead of federal.  Also, Nancy Fisher of University of Washington wonders whether insurers unable to assess risk are still insurers: "If we say health insurance can’t use [genetic information] to spread the risk, then maybe we don’t want health insurance and should find another way to pay for illnesses."

Read the whole article:
Joel B. Finkelstein, Protecting genetic privacy: Is a law needed? American Medical News.  April 5, 2004.

For more on the views of Francis Collins regarding genetic discrimination legislation, see here.

For more details on the views of Dr. Fisher, see her recent editorial in the Cleveland Clinic Journal of Medicine "Genetic testing and health insurance: Can they coexist?" in pdf.

 

April 3, 2004 | Filed Under genetic-testing, insurance, policy, privacy 

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