Patients most likely to benefit from genetic testing are either avoiding it altogether or paying for it themselves to keep hereditary disease out of their health records--and most importantly, off the books of their insurers.

These fears of discrimination are hampering geneticists' ability to recruit research subjects, and they're leading patients to cancel appointments for tests that detect cancer risk. "We are dealing with potential lifesaving interventions," said a doctor at Memorial Sloan-Kettering Cancer Center. "It's a tragedy that people are being scared off by this."

Insurers deny that they discriminate against members based on genetic predispositions. But a study by the Georgetown University Health Policy found that in 7 of 92 underwriting decisions, insurance providers evaluating hypothetical applicants said they would deny coverage, charge more, or exclude certain conditions from coverage based on genetic test results. Legislation outlawing this sort of discrimination--by insurers and by employers--passed the House last year but has yet to reach the Senate floor.

- read the story [1] in the New York Times

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