Oct. 25, 1999 (NEW HAVEN) -- Fear of genetic discrimination often keeps those concerned they may be at risk for developing hereditary cancer away from the genetic testing that can -- in some cases -- save their lives. Concerns about discrimination, privacy and confidentiality in insurance and employment have even led to state and federal legislation to help protect these individuals.
The same fears of genetic discrimination are shared by experienced cancer genetic counselors, according to a study led by Ellen Matloff, M.S., director of the Cancer Genetic Counseling Shared Resource at the Yale Cancer Center. However, most of the counselors in the study said they would go ahead with testing -- if certain safeguards were in place. Results of that study are being presented today at the annual meeting of the American Society of Human Genetics in San Francisco, CA.
In a survey of nearly 300 active cancer genetic counselors, the vast majority (85% and 91%) said they would pursue genetic testing for BRCA (breast cancer gene) or HNPCC (hereditary nonpolyposis colon cancer gene) mutation if one parent or sibling was a known carrier of the mutation. However, 68% said they would NOT BILL genetic testing charges to their health insurance company, and 26% said they would use an alias. In addition, 82% of counselors said that if 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," said 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 said 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," said Matloff. "We have in place a number of safeguards that protect patients and make them feel more comfortable."
Results of this study are being presented today during a press briefing and round table discussion at the American Society of Human Genetics Annual Meeting in California. Joining Matloff in a session entitled "Genetic Testing: Should Consumers Worry?" are Mary Claire King, Ph.D., pioneer in the search for the BRCA1 and BRCA2 mutations, Mark Hall, an attorney who conducted a study in seven states with different laws restricting the use of genetic information by health insurers, and Hank Greely, professor of law and co-director of the program in Genomics, Ethics and Society at Stamford University.
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. Bringing together the resources of Yale-New Haven Hospital and the Yale University School of Medicine, its mission encompasses patient care, research, cancer prevention and control, community outreach and education.
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