Regulating the Researchers
News: Does a ban on public funding mean a ban on public knowledge?
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In 1995, Congress passed legislation banning federal funding for human embryo research. Many Americans might be surprised, then, to hear that John Gearhart, a professor of obstetrics and gynecology at Johns Hopkins University Medical School, does experiments on human embryo cells as part of his research on tissue development.
Historically, federal funding has provided the seed money for most scientific breakthroughs in the U.S.; it was a foregone conclusion that restricting funding meant restricting research. Today, with advances in genetic research promising extreme profitability, the game is changing: Pharmaceutical and biotech firms spent $19 billion in 1996 on private research, enabling scientists to continue even controversial work. Amid the frightening talk of human cloning and organ harvesting, Congress faces a baffling problem: If you want to stop science, how do you do it?
Federal funding, primarily disseminated through the National Institutes of Health, still supports well over two-thirds of all university biomedical research. And with an NIH grant comes respect. Its rigorous selection process rejects 70 percent of all proposals and requires peer review prior to funding. Publication of findings is also standard, so the NIH-funded work is open to public review—and criticism.
Public opposition, for example, led to the human embryo research ban. In 1995, prodded by pro-life activists, House GOP members attached a rider to the NIH funding bill that stopped all such research. The few scientists who have continued are doing so with private backing—and they prefer to keep quiet about it.
Jamie Grifo, head of New York University Medical Center's division of reproductive endocrinology, has perfected a technique to test human embryos for genetic diseases prior to implantation, but says he keeps his research out of the limelight to avoid a backlash from anti-abortion groups. After a lifetime of research, Grifo says he is dismayed that "people are criminalizing the work we do." He funds his work through fees from a fertility and gynecological clinic he runs and does not charge for experimental techniques, such as embryo biopsies. But many in reproductive medicine do charge, which means the research gets limited to opportunities based on consumer need and, adds Grifo, "suboptimal conditions" because "we haven't been able to do embryo research." Indeed, critics contend that by defunding controversial research, Congress has ceded oversight to private entities.
Yet purists counter that public funding is a de facto stamp of approval and that funding bans should be used to assert moral principles—a crucial point in the cloning debate, according to Stuart Newman, a professor of cell biology and anatomy at New York Medical College. "It is socially a bad thing to blur the lines between manufacturing objects and human life," he says. "Federal funding will lend toward blurring that line."
Current biotechnology research makes such assertions a moot point. Johns Hopkins' Gearhart, for example, has managed to finance his work through private sources, including a licensing agreement with the California-based Geron Corp. (see Editor's Note). Private interests will even augment federal funding for the promise of a patent, and presumably a moneymaking product, such as new skin tissue. The result is a kind of "double dipping," argues Arthur Caplan, head of the University of Pennsylvania health system. "We're paying once for the research and then again for the products we created. Public, private, makes no difference," he says.
There are more dramatic options for limiting science. A recent Senate bill seeks to criminalize somatic cell nuclear transfer (the technique that could lead to cloning), jailing those who practice it. The bill is currently stalled in committee; similarly proposed bills await votes in 24 states.
David Magnus, head of graduate studies for the Center for Bioethics at the University of Pennsylvania, says the blurring between public and private funding is a mandate for more sophisticated regulation. He proposes giving state medical licensing boards stricter ethical oversight.
Even if science can be regulated, ostracized, or even criminalized, can it really be stopped? "We need to see if it's possible to construct a system that would provide reassurance to the public but would still preserve the opportunity to do research," says Paul Berg, director of Stanford University's Beckman Center for Molecular and Genetic Medicine. "We need to keep it in the public eye, but do it in a respectable way."
