Genetic News, Borne With Grace

To the Editor: Many people are unwilling to take genetic tests, knowing that afterward they might not be able to get a job or health insurance. But the risks don’t stop with that individual. Genetic records can be used to discriminate against the children and other relatives of a patient.

Congress should act now so that genetic results are never disclosed to insurers, employers or the other 600,000 health-related businesses and government agencies that are now granted access to Americans’ complete personal health information by the Health Insurance Portability and Accountability Act, even with consent.

These records need the utmost protection in the digital universe. Once genetic records are out in cyberspace, like Paris Hilton’s sex video, they can never be made private again.

Deborah C. Peel, M.D.
Chairwoman
Patient Privacy Rights
Austin, Tex., March 19, 2007

{Today the New York Times published my letter to the Editor on genetic tests. The letter is a shorter version of the comments I posted along with the original storyabout the woman who took and then revealed the results of her genetic test for Huntington’s Chorea—exposing her family both to discrimination and unwanted public scrutiny about their rare and fatal genetic illness. ~ Dr. Deborah Peel, Patient Privacy Rights}

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