GENETIC TESTS CREATE DEBATE ON CIVIL RIGHTS
By Carol M Ostrom
Seattle Times staff reporter FEBRUARY 19, 1997
Civil libertarians are the "canaries in the coal mine" when it comes to the problems of genetic testing, according to Phil Bereano, a University of Washington professor and expert in the social uses of technology.
Squawking up a storm at a workshop on human-genetics research yesterday at the meeting of the American Association for the Advancement of Science, civil libertarians and concerned scientists seemed to be trying to tell us something.
Society today is in the middle of a "testing mania or hysteria," Bereano told the group. Genetic testing is presented not as an authoritarian pronouncement by Nazis in brown shirts, but as an "efficient and rational" thing to do by "men in brown suits," he said. Such tests, Bereano said, nevertheless present a clear threat to individual liberties.
Forced collection of DNA from those in the military, exclusion from health insurance because of "bad genes," and job discrimination are among the perils increasingly experienced by people as tests become more and more common, Paul Billings, a Stanford University professor, told the group.
In Washington state, fears were deemed real enough that a law passed in 1995 specified genetic information as one type of health information that can't be used to exclude applicants from health insurance.
On the other side, David Christianson from the American Academy of Actuaries argued that the problem was overblown.
"Fears of discrimination are real but exaggerated," said Christianson,, who headed a task force on genetic testing for the group. The academy is a public-policy organization for actuaries, people who help insurance companies figure out which people are more likely to die sooner.
For one thing, insurers aren't forcing people to get genetic tests, he said. For another, tests can sometimes help a person get insurance. In the case of Huntington's disease, a test might clear someone when a family history of the disease would make it otherwise impossible to get life insurance until middle age, he said.
In any case, banning the use of genetic information in the classification and selection of applicants could mean the ruin of the insurance system, he predicted. At the least, a ban could mean much higher premiums for everyone, he said.
Other speakers discussed cases, that outlined the consumer- and civil-rights implications of genetic testing.
In one case, Billings said, a woman who lost one breast to cancer has debated taking a test to determine whether she has a gene that predisposes some women to breast cancer. Not only must she worry about her other breast, but she also must worry that if she has the gene, her niece, who is applying for health insurance, will be turned down.
In fact, relatives in just that situation have been excluded from insurance, said Billings, who works with the Council for Responsible Genetics, an advocacy group.
Somehow, Billings added, there is a perception that genetic risk is different than other health conditions, somehow less able to be modified by an individual. In fact, being able to identify a risk genetically almost always means nothing more than a predisposition, one that may well be able to be modified by lifestyle or drugs.
In another case, a postal worker developed blindness. He applied for disability and retirement pay, but when it was discovered that his blindness resulted from a genetic condition, benefits were denied. The reasoning? His blindness resulted from a "preexisting condition" that predated his 25 years with the U.S. Postal Service.
Although the nation's highest court has been protective of invasions of privacy in many areas, when it comes to the military, the court has allowed free rein, said Nadine Strossen, national president of the American Civil Liberties Union.
Donald Power, a Navy nuclear power machinist, said he was ordered to give a DNA sample when he reported to duty on the USS Arkansas in Bremerton last year. Power refused. He believed there was something wrong with the collection of his DNA, he said, even though he wasn't quite sure what it was.
Power, who had been studying Native-American spirituality, said he had become convinced that his cells, like other parts of his body, were part of his "personal integrity" and needed to be respected.
But when Power refused to submit to the cheek swab to collect DNA, the Navy removed a stripe, rescinded his nuclear classification and much of his pay. As a result, Power said he lost the house he and his wife were buying. He has asked for a waiver from the DNA collection for religious reasons his case is before the Department of Defense.
What's needed in the whole debate over genetic information, said Billings, is a policy framework for "the right to be left alone."
Deborah Senn, Washington state insurance commissioner, noted that there is now a move afoot in the Legislature to repeal the law prohibiting insurers from excluding applicants on the basis of medical and genetic conditions.
What is scientifically and technically feasible should not be allowed either to drive public policy, Senn said, or to "trump our values."