‘NewsHour’ Looks at Legislation Aimed at Preventing ‘Use and Abuse’ of Genetic Testing
PBS' "NewsHour with Jim Lehrer" last night explored the "use and abuse of genetic testing," and reported on current legislation proposed in Congress. Speaking yesterday at a news conference on the subject, lawmakers urged the passage of the Genetic Nondiscrimination in Health Insurance and Employment Act (HR 602), sponsored by Rep. Louise Slaughter (D-N.Y.) and Senate Majority Leader Tom Daschle (D-Mo.). The bill would impose civil penalties against employers that discriminate against employees based on genetic factors (Dentzer, "NewsHour with Jim Lehrer," PBS, 6/7). The bill also would prevent insurers from using genetic information to deny, cancel or change health coverage. During the news conference, Rep. Connie Morella (R-Md.) said, "No American should fear discrimination, either in the workplace or with their health insurance, simply because of their genetic makeup" (Morella release, 6/7). Daschle said that the bill's backers would move it swiftly through Congress, adding, "We're here to say we're through with waiting. It's time for our laws to catch up with science. .. Discrimination based on genetic factors is just as unacceptable as discrimination based on race, gender, national disorder and disability. And it must stop."
Providing background on the topic, NewsHour pointed to a case where employees of Burlington Northern Sante Fe Railway Co. were tested for a rare, inherited disease without their knowledge or consent. The case began when some workers were diagnosed with carpal tunnel syndrome and reported the injury to Burlington. Instead of reporting the cases to the federal government as required by law, Burlington sought to determine whether the injuries were work-related. To do so, Burlington's chief medical officer devised a comprehensive medical exam to screen workers for about 20 conditions, ranging from diabetes to alcoholism, and asked 35 workers to undergo it. According to an attorney representing the workers, the tests aimed to find any condition that could produce symptoms similar to work-related carpal tunnel syndrome. One of the blood tests looked for the rare genetic disorder hereditary peripheral neuropathy, a symptom of which is carpal tunnel syndrome. Burlington allegedly did not tell all the workers that they were being tested for genetic diseases. One worker who was informed about the testing refused to participate and received a "threatening letter" from Burlington stating that not complying with the testing constituted "insubordination" and was grounds for termination. Burlington's actions comprise the "heart of a groundbreaking lawsuit" brought by the Equal Employment Opportunity Commission, which alleges that Burlington violated the Americans with Disabilities Act. Sitting Commissioner Paul Miller, said, "For a company to engage in medical testing or inquiries, the tests need to be job-related and consistent with business necessity. ... To have some sort of future marker for a disabling condition is not really related to one's ability to do a job." The EEOC won an early victory in April -- Burlington admitted it had tested the workers and agreed to stop further testing. Still, the EEOC is investigating other charges about the worker who was threatened with termination of employment. To listen to the "NewsHour" report, go to
http://www.pbs.org/newshour/health/genetics/. Note: You must have RealAudio to listen to the report.