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What You Don’t Know … 43% Decline To Learn Of Genetic Cancer Risk

Given a chance to learn if they carried a gene that raised their risk of developing breast, ovarian, or prostate cancer, surprisingly few of the 279 women and men in a new study - only 43 percent - chose to take such a look at the future.

That was a central finding of the largest study yet of how people react when offered a blood test for the so-called breast cancer gene, BRCA1, which boosts the likelihood of developing the disease to 87 percent, about eight times higher than that of women generally.

The gene also confers a 40 percent to 60 percent lifetime risk of ovarian cancer and about a 10 percent risk of prostate cancer in men.

Among the study subjects, who belonged to families with pronounced histories of breast and ovarian cancer, a major reason for declining the BRCA1 test was fear that a positive result would jeopardize health or life insurance. Another prominent fear was that a faulty test would mistakenly label, and perhaps stigmatize, a noncarrier as positive, prompting much needless anxiety and perhaps even surgery.

The issues raised by the study spotlight an emerging dilemma that pits a newly acquired power of science against the foremost of medical ethics, which is to do no harm.

“Being concerned about insurability and discrimination is very unsettling to people and may dissuade them from seeking testing,” said Dr. Henry Lynch, a cancer specialist at Creighton University in Omaha and co-author of the study. It appears today in the Journal of the American Medical Association.

Biotechnology firms have rushed to develop the BRCA1 test and others like it for possible use outside of a research setting. But critics, such as the watchdog Council for Responsible Genetics, say hasty commercialization could lead to an epidemic of insurance discrimination.

A spokesman for the Health Insurance Association of America, however, said that it is unfair for consumers to withhold knowledge from an insurer. “The insurance industry needs to be on an equal footing with an applicant.”

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