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While Angelina Jolie’s New York Times editorial in May drew public attention to genetic testing and preventive surgery, a new survey on public attitudes suggests that Americans are open to it but still uncertain about its use and implications.
In an online survey of 1,200 insured American adults commissioned by the University of Utah’s Huntsman Cancer Institute, about a third of respondents said they would not seek genetic testing to predict their likelihood of developing a hereditary cancer, even if the cost of testing was not an issue.
Interestingly, just as many said they would be very or extremely likely to seek aggressive preventive treatment, like a mastectomy, if their test results suggested they were predisposed to cancer and also had a family history.
According to the American Cancer Society, about 5 to 10 percent of cancer cases are linked to inherited gene mutations.
According to the survey, people most often said they wouldn’t be tested because of concerns about how the results might affect their employment and insurance coverage. Under the Genetic Information Nondiscrimination Act, employers and insurers are prohibited from treating people unfairly because of genetic differences that may affect their health. (However, it’s worth noting that there have still been documented cases of this happening.)
About 85 percent said they would seek genetic testing to help doctors determine the best course of treatment if they were diagnosed with cancer.
Dr. Saundra Buys, an oncologist and medical director of high risk cancer research at the institute, pointed out in the release of the survey results that they underscore the need for public education about genetic testing and the importance of genetic counseling to accompany it.
The good news for the research community is that, of the 85 percent who said they’d get tested after a cancer diagnosis, almost three-quarters of them said they would be willing to share their genetic information for research purposes.
Only 8 percent of respondents reported having had a genetic test.