Gene research holds both promise and perils
April 28, 1996
Web posted at: 12:15 a.m. EDT
From Correspondent Jeff Levine
WASHINGTON (CNN) -- Could your most private medical information become public?
Top cancer researchers are struggling to answer that question. At an international meeting, they urged Congress to pass a health reform package containing protection against genetic discrimination.
"People are going to be hurt adversely by the effects of genetic testing. The medical knowledge that they gain is limited at this time," said Dr. Paul Billings of Stanford Medical School. But doctors worry that as more and more information can be gleaned from genetic data, testing for inherited disorders could cause people to lose their health insurance.
Two U.S. Marines chose a court martial earlier this month rather than submit to genetic testing. The punishment amounts to a legal slap on the wrist. But the pair was making a point about how their DNA samples could be used against them.
"What if insurance agencies gained power to deny people coverage if they didn't turn over DNA samples, or what if DNA information was passed to employers who could screen applicants, and people might start being discriminated against?" asked Cpl. John Mayfield, one of the suspended Marines.
The military uses the DNA in a blood sample like a biological fingerprint -- the most positive method of identifying last remains.
But this building block of other molecules could be an open book, describing intimate health information. For Mayfield, "it's just a privacy issue," he said.
Still, genetic testing has great potential in the medical arena. Developers of a breast cancer test say genetic testing will encourage preventive treatments and that the obstacles to using the screen are political, not scientific.
"Will this knowledge be used to make people live longer, or will it be used to discriminate against individuals who have predispositions? Fortunately, the latter is being addressed by both houses of Congress," said Mark Skolnick of Myriad Genetics.
The House and Senate have passed health reform bills with language barring insurance discrimination based on genetic information. The American Association of Cancer Research informally endorses the proposals.
"All of us in the genetics community have seen this as a major barrier to some of the opportunities and advances in genetics," said Dr. Louise Strong, who works at the American Association for Cancer Research.
Ironically, those advances must wait on the balky processes of government. Even the most ardent backers of testing admit there's little point in screening for diseases that insurance companies won't cover.
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