Stigmatization fires the debate
Unlike the Clinical Laboratory Improvement Amendments, which had their origins in Pap testing scandals, proposed regulation of genetic testing has not largely been driven by public worry about errors. In a few instances, false-positive test results have led patients to take measures such as preventive mastectomies that turned out to be unnecessary. But it is the fear of stigmatization and potential discrimination that has figured most prominently in coverage of genetic testing.
A notable case involved the employees of Burlington Northern Santa Fe Railway who were tested without their knowledge for Chromosome 17 deletion, a supposed marker for a genetic predisposition to carpal tunnel syndrome. The case, settled in April, was the U.S. Equal Employment Opportunity Commission's first court action challenging workplace genetic testing under the 1990 Americans with Disabilities Act. On June 7, a Burlington Northern employee and a lawyer representing the employees spoke at a news briefing on S.318, which would ban genetic discrimination by employers and health insurers.
Majority leader Tom Daschle (D-SD), lead sponsor of the bill, said, "While genetic discrimination is still relatively rare, experts tell us that is because genetic tests are still relatively rare. As genetic testing becomes more affordable and more common, the incidence of discrimination is likely to increase dramatically."
However, as Judith Lewis, PhD, RN, a member of the SACGT and associate professor at the Medical College of Virginia School of Nursing, said at the May SACGT meeting, the potential for stigmatization, while different with genetics, is not a new problem. "I remember when tuberculosis was a stigmatizing illness," she said, also pointing to the stigma that continues to surround HIV testing and its attendant informed consent problems. She urged that the committee pay attention to what is unique about genetics.
Ironically, what did not emerge in news articles about the railroad workers, says Dr. Wayne Grody of UCLA Medical Center, was that there is no evidence the test is even linked genetically to carpal tunnel syndrome.
"No one had heard of a carpal tunnel test," he says. The coverage stressed the issue of discrimination, which is important, he notes, but the use of a test that hasn't been proved to have a genetic link to the syndrome could be considered even more alarming.