Refereeing the Next Big Boom 

In stem-cell research, as with so many other things, it all boils down to a case of the East Bay versus Palo Alto.

Say what you will about why Californians voted for the stem-cell research initiative. Whether they genuinely believed in the field's potential, saw it as a job creation bill, or just wanted to poke a stick in George W. Bush's eye, that $3 billion pot of public money has unleashed a torrent of activity, as medical researchers scramble to apply for grants that could be disbursed as early as May. And the eye of this particular storm is located in Palo Alto, the home of Stanford University and real-estate mogul Robert Klein, who conceived the stem-cell initiative and chairs the Independent Citizens Oversight Committee, the organization responsible for disbursing the money.

But Klein's antipode has emerged in the person of Charles Halpern, a former Washington, DC lawyer and Berkeley resident who has become one of the main critics of the way the committee does business. In December, just before the committee was due to meet for the first time, Halpern knocked Klein back on his heels by writing a letter to California Attorney General Bill Lockyer and claiming that the meeting violated key provisions of the state's Open Meeting Act. State Treasurer Phil Angelides scrapped most of the meeting's agenda and left the impression that committee members were about to secretly determine how to spend $3 billion of taxpayer money.

Now, Halpern is meeting with fellow attorneys and officials with Oakland's Center for Genetics and Society to strategize on how to make the committee more forthcoming about its use of public money. If Klein's organization is shaping the future of medical research in California, the East Bay is emerging as the epicenter of that future's skeptics. As with everything else in life, Halpern jokes, stem-cell research is boiling down to another case of "the East Bay versus Palo Alto."

Halpern spent thirty years in the nation's capital, founding the Bazelon Center for Mental Health Law. He moved to Berkeley three years ago and began working with the Center for Genetics and Society. Now that stem-cell research is a reality, he is working to undo what he regards as deep flaws in the way officials will fund new directions in medicine. "When it passed, it seemed to me we really ought to make sure the money should be spent well," he says.

The Independent Citizens Oversight Committee may be subject to laws requiring that it meet in public, but the initiative allows its three subcommittees to work behind closed doors. These so-called "working groups" will issue recommendations on everything from ethical and scientific standards to which projects should get funded. To Halpern, such secrecy could create the opportunity for working group members to fund projects in which they have a financial stake or take research in a direction many Californians find morally abhorrent. "This enthusiasm for secrecy is completely unacceptable, but especially when you're going into areas that are extremely sensitive," Halpern says. "Cloning embryos, cultivating embryos, and then destroying them for stem cells and genetic manipulation. These go to the core of what it means to be a human being."

Klein did not return a phone call seeking comment, and no one else at the California Research and Cures Coalition, the nonprofit temporarily charged with administering the money, is authorized to talk to the press. But several researchers suggest that Halpern is overstating how unprecedented such secrecy is in medical research. Scientists have a proprietary interest in the results of their work, they say, and if they can't enjoy exclusive access to the procedures they develop, the financial incentive at the heart of medical research would simply disappear, and so would innovation.

As for questions about how much of the profits the state should recoup from public investment, one official close to the stem-cell project claims that in cases of rare diseases, researchers need a greater share of the profits in order to be convinced to conduct research. Such sensitive negotiations, the official claims, cannot realistically happen in the light of day.

Marcy Darnovsky, the associate director of the Center for Genetics and Society, agrees that the public doesn't have to scrutinize specific research proposals: "I don't think we would have objections to those narrow concerns," she says. But Darnovsky claims that the committee's penchant for secrecy extends beyond such concerns. For example, one of the committee's working groups will recommend funding for research facilities; why, she asks, do officials have to make secret decisions about which buildings to construct?

Far more troubling to her is the working group charged with establishing ethical standards for the new research. The public has a critical stake in the morality of such science, she says, and must be allowed to insist that research does not encompass the creation of, for example, inheritable genetic modification, or "designer babies." "The potential is you're going to be altering very early embryos, so you're giving birth to children who are going to grow seven feet tall, so they'll be a good basketball player," Darnovsky says. "I would like to be assured that members of the working group would ask the question, 'Is there a medical justification for this?'"

But how do you stop an idea? Many stem-cell research projects could well involve, to borrow a phrase, "dual-use technologies." Research could produce a procedure that not only cures Parkinson's disease, but also grows unnaturally large brain tissue or something. If this sounds grotesquely improbable, consider the history of Genentech. The South San Francisco-based biotech firm developed growth hormone drugs that helped children afflicted with various forms of dwarfism, but medical ethicists agonized over the realization that physicians could easily prescribe them to healthy children who just happened to be short. Once a procedure is on the market, Darnovsky worries, how do you restrict it to purely therapeutic applications?

Such issues seem light-years away from where the industry is currently at. The first round of funding is tentatively scheduled for May, leaving a short window for researchers to come up with ideas. One researcher suggested that many scientists may simply pluck projects that barely have any bearing on stem cells and "rebrand" them as stem-cell projects. But Robert Tjian, the director of UC Berkeley's Health Sciences Initiative, thinks that his colleagues have been dreaming of this opportunity for a long time. "I'm not pessimistic that that first batch of grants will be all garbage," he says. A slightly likelier problem, he acknowledges, will be the conflict between basic research and research that leads to marketable drugs and procedures. Because the committee is divided between scientists and disease advocates, funding decisions could become a fight between people who want to learn more about the raw science, and people who want to save their mothers from dying. But even these fights will be minimal, he predicts: "I don't know what the disease advocates are expecting to see. But the truth of the matter is we're all on the same page."

All, that is, except Darnovsky, Halpern, and their fellow critics in the East Bay. As California gears up for what may be the most ambitious medical research project in history, they will continue to try to pass laws banning science from going too far, to seed the state with medical ethics for a new millennium.

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