Many potential victims forgo gene test for cancer Fear of higher insurance, faulty exam blur decision


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.

The study "is a very important contribution to understanding what possible choices people will make when they face the actual experience," said Dr. Francis Collins, director of the National Center for Human Genome Research at the National Institutes of Health.

"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.

At the same time, the study uncovered real psychological and medical benefits of being tested. People who worried they might have the gene and suddenly learned that they did not -- instead, they had the same cancer risk as women generally -- became less depressed.

Testing negative for the gene also has the potential to spare women unnecessary surgery, the study showed. Before the test was available, women whose family history placed them at high risk of cancer sometimes had their breasts or ovaries removed.

Pub Date: 6/26/96

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