Advocates, legislators gear up for battle in the fight to keep genetic information, testing secure from employers, insurers.
Carolina Hinestrosa was 35 when she beat breast cancer. She was 40 when she beat it a second time. Her younger sister also battled breast cancer twice, and over the past few years, two of her cousins and an aunt were diagnosed with the disease.
Of course, Hinestrosa, an executive vice president with the National Breast Cancer Coalition, strongly suspects that a genetic mutation for breast cancer runs in her family. Knowing for sure could help her and her relatives take steps to possibly avoid or better manage the disease. But she said she has chosen not to seek confirmation through a genetic test for fear of the potential consequences it may have on her 15-year-old daughter.
Hinestrosa worries that if she tests positive for the “breast cancer gene,” her daughter might be obligated to disclose having a hereditary predisposition to the disease—personal information that could be misused to deny her health insurance or even employment in the future.