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Law forum debates case for genetic privacy

Genetic Privacy

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As the possibilities unleashed by the human genome project offer scientists new opportunities for genetic research never before possible, some scholars are beginning to question the frontier of genetics not only on the basis of science, but on the basis of law and philosophy. A panel of scholars did just that last week at the University of Montana, in a forum moderated by Montana Supreme Court Justice James C. Nelson marking the 30th anniversary of the Montana Constitution.

“Science fiction is becoming reality,” said UM Law Professor Mark Kende. “The question with all this technology is, are we moving towards the brave new world that Aldous Huxley wrote about, or are these developments going to bring us a better life?”

One of the main concerns aired by the panel was whether access to genetic information violates the Montana Constitution’s explicit privacy clause.

“A person who finds out about their genetic makeup may be better able to decide what kind of medical procedures to have, but their health insurer could use that information to deny them coverage,” noted Kende.

Kende argued that although the constitutional delegates may not have foreseen the specifics of technological breakthroughs, they were nonetheless concerned with how emerging technology might affect privacy interests. Kende quoted Bob Campbell, a delegate at the 1972 constitutional convention who said 30 years ago, “Today, with wire taps, electronic bugging devices, photo-surveillance equipment, and computerized data banks…prudent safeguards against the misuse of technology are needed.”

Thirty years later, lawyers and philosophers are still struggling to define those safeguards, as both individuals and companies seek to utilize genetic technology. For example, a company was recently sued for screening its workers for a genetic predisposition to carpal tunnel syndrome without telling its workers, fearing that some of them might later sue for damages. The company had planned to defend itself by claiming that the victims had a genetic predisposition for the syndrome. Such concerns, weighed against the public’s desire for genetic privacy, constitute serious constitutional questions, noted UM Law Professor Larry Eileson.

“Genetic engineering may create another level of elitism and an enormous gap between the haves and the have-nots,” said Eileson, noting that lawmakers may not be able to act on issues of genetics until they first see how private companies utilize the technology.

“We sort of have to respond after the fact,” Eileson said. “We assume the insurance companies are going to get the information and then we say, ‘Let’s see the information and the rates and then we’ll see what kind of games you [insurance companies] are playing.” But Kende believes it’s the job of Montana’s Supreme Court justices to rule proactively.

“Assuming there’s no [federal] preemption, the Montana Supreme Court will have to balance and will have to apply the state Constitution to private actors,” he said.

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