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"Doesn't it bother you," Collins asked Doll during a conference in Washington on Thursday, "that your standard would allow patent protection for roughly 40 percent of human genes, and yet if you ask any working scientist what percent of human genes they know the function of, you'd get, maybe 2 percent?"

"Everybody's filing for these patents," said Doll. "Not just the Incytes of the world; zillions of universities are taking the same approach."

"I don't doubt it for a second but it doesn't make me feel any different," an exasperated Collins responded. "When there's a gold rush, a lot of people go to California."

Other scientists are less restrained in their attacks on the biotech industry. "The idea of patenting DNA sequences is abhorrent to me, but in particular, the way it's being done now is intellectually dishonest," says Robert Nussbaum, a molecular biologist at NIH.

Nussbaum, who works on Parkinson's disease, said the kind of gene patent applications that Doll's office has decided to approve are likely to be shaky in their claims. Even if correct, he said, such claims are based on searches of public databases and "are being done on the backs and shoulders of research funded by the public and charitable foundations. It doesn't seem right that these sequences should be taken and locked up for the purpose of profit making."

Doll points out that hard work has never been a requirement to win a patent from the U.S. Patent Office, which generally tries to be as friendly to patent applicants as possible. "We don't care how you find out something new, only that you're the first to find it," he says. And some biotech officials say that scientists are simply bitter at the fact that technology is transforming the manner in which biological information is gathered.

Officials at Incyte, a Palo Alto, Calif., company that sells its genome information to more than two dozen pharmaceutical and biotech companies, like to point to a discovery made last year by CV Therapeutics, a small California biotech company. Using Incyte's databases and a few simple experiments, scientists from CV Therapeutics were able to identify a set of genes involved in Tangier disease, a heart ailment discovered among people living on Tangier Island in the Chesapeake Bay. CV's discovery took two months, but it was listed by the American Heart Association as one of the top 10 discoveries of 1999.

"Medical research is increasingly a matter of using technologies to gather a bunch of pieces of information," says Lee Bendekgey, general counsel for Incyte. "It's really accelerating things and that's what matters. And when people make discoveries like that, they deserve both public accolades and rewards."

In the 1980s, in a more primitive era of genetics discoveries, it took Francis Collins several years to isolate and clone the cystic fibrosis gene. At the time it was one of the more remarkable chapters in genetics research. The University of Michigan, where Collins made the discovery, holds the patent on the gene. As it happens, Michigan doesn't charge researchers a dime to use it.

Of course, patent holders want people to use their inventions -- if no one uses them, they don't get paid. And intellectual property lawyers say that when the patents on the human genome get sorted out, relevant ones will be bundled into packages that can be licensed to researchers and doctors in useable form -- for a price.

When the Human Genome Project began, ethicists were primarily worried about whether knowledge from the genome would be used for genetic discrimination, or to create genetically enhanced children or eliminate the genetically unfit. But such concerns may be beside the point if the technology is too expensive for anyone but the rich.

Those who care for the genetically vulnerable appear most aware of this paradox. Judith Tsipis' son Andreas never learned to walk, talk or feed himself. But he could think -- and he had a good sense of humor, she says. Asked the difficult question of whether Andreas' birth should never have taken place, Tsipis shrugs off facile answers.

"Andreas was my child and I loved him dearly. He was loved and cared for superbly well but he still had a difficult life, especially toward the end. Would I have wanted him to be born? I can't answer that. But I'm working very hard for screening so that families have all the options, and one option is an abortion. The key thing you need is information, education, and the availability of testing."

"If patents hinder research," she adds, "it will make it harder for people to develop cures for these diseases."
salon.com | March 7, 2000

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