Yale Bulletin and Calendar

October 25-November 1, 1999

Volume 28, Number 10

Study identifies common fears about genetic testing

Fear of genetic discrimination often keeps those who may be at risk for developing hereditary cancer away from the genetic testing that can -- in some cases -- save their lives, according to a Yale Cancer Center study.

Those same fears are shared by experienced cancer genetic counselors, says Ellen Matloff, director of the Cancer Genetic Counseling Shared Resource at the Yale Cancer Center, who led the study. Most of the counselors in the study, however, said they would go ahead with testing -- if certain safeguards were in place.

Results of the research were presented at the annual meeting of the American Society of Human Genetics in San Francisco.

In a survey of nearly 300 active cancer genetic counselors, the vast majority (85 percent and 91 percent) said they would pursue genetic testing for the breast cancer gene or the hereditary nonpolyposis colon cancer gene if one parent or sibling were a known carrier of the mutation. However, 68 percent said they would not bill genetic testing charges to their health insurance company, and 26 percent said they would use an alias.

In addition, 82 percent of counselors said that, if they tested positive, they would share the results with their physicians, but many would not want their carrier status documented in their medical records.

"Those closest to the issue still believe the benefits of genetic testing outweigh the risks," says Matloff. "But there are real risks, and this study underscores the need for better legislation in this area. There are loopholes that need to be closed."

While advising caution in genetic testing, Matloff emphasizes that there have been no documented cases of discrimination arising from the genetic counseling and testing program at the Yale Cancer Center. "We are very aware of and sympathetic to these concerns," she notes. "We have in place a number of safeguards that protect patients and make them feel more comfortable."

Results of this study were presented during a press briefing and roundtable discussion at the American Society of Human Genetics Annual Meeting in California.

The Cancer Genetic Counseling Program is a shared resource of the Yale Cancer Center, one of a select network of comprehensive cancer centers in the country designated by the National Cancer Institute and the only one in southern New England. The center brings together the resources of Yale-New Haven Hospital and the School of Medicine, and its mission encompasses patient care, research, cancer prevention and control, community outreach and education.

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