In a survey of genetic counselors, Ellen Matloff of the Yale School of Medicine found that while the majority said they would agree to have genetic testing, many would try also to limit their insurer's knowledge of the results. She found that 68 percent of them would pay for the testing themselves rather than bill insurers. Sixty percent said they would not tell their colleagues of the results because they feared job discrimination. Matloff added there have been no widespread reports of such events occurring. Breast cancer genetics expert Marie Claire King of the University of Washington said she is not aware of women having difficulties with insurers just because they are found to have a genetic predisposition for breast cancer.
Women are concerned.
Maintaining confidentiality is essential for participants in her studies, which may mean that test results are not put on the patient's hospital chart or that some samples are given anonymously. Matloff noted that before genetic testing entered the mainstream, geneticists had thought long and hard about the possibilities of discrimination, and that perhaps their anticipation of problems has continued to shroud reality in a fog of suspicion and anxiety. Hank Greely, a law professor and co-director of a genetic ethics program at Stanford University, offered another explanation. Most people who are considering gene tests are usually worrying about potentially lethal conditions and the impact on their families, and anticipating feelings of guilt or resentment at passing genes on or having genes passed to them. But that emotional burden is not as easy to discuss, perhaps, as the fear of being treated unfairly by insurers.