Text of a presentation given at the symposium, "The Next Four Years, the Biotech Agenda and the Human Future," New York, NY

I'm going to talk about the $3 billion California stem cell initiative passed by California voters last month. This initiative, "Proposition 71," was closely watched across the country, and is still being watched in other states as the massive program it approved gets underway. Many people outside California, as well as many Californians, understood it as a referendum on the Bush administration's restrictions on stem cell research, and as a chance to repudiate the anti-abortion rights agenda.

But in fact, women's health advocates and other progressives in California were divided about Proposition 71. Some endorsed the initiative; it was strenuously opposed by others-including by us at the Center for Genetics and Society, by the 58,000-member California Nurses Association, and by an ad-hoc group called Pro-Choice Alliance Against Proposition 71.

The progressive critics of the initiative support embryonic stem cell research using surplus IVF embryos, and oppose the Bush administration's policy that prohibits using those embryos. Like other supporters of abortion rights, we're particularly disturbed by Bush's obvious motivation-pandering to the anti-choice right. His stem cell restrictions represent one of the few areas in which this administration has declined to give any corporate sector pretty much what it wants. Its stem cell policy stands in stark contrast to its pro-corporate, anti-regulation bias in many other areas of environmental and science policy.

Ironically, the California stem cell initiative, widely interpreted to be anti-Bush, is in fact an extremely pro-corporate and anti-regulatory measure. Much of the $25 million spent to pass it was contributed by venture capitalists, who had no trouble recognizing it as a windfall for the corporate biotech sector. It is a model of the wrong way to support stem cell research, a model of irresponsible development of the new human biotechnologies.

What I'm going to do in the next few minutes is:

First, summarize what the initiative does, and what's wrong with it.

Second, say a few words about the unique threats to progressive values that may face us if the politics, technologies, and ideologies represented by the California stem cell initiative develop in a certain direction.

And third, talk about the lessons we've drawn about the politics of stem cells and other human biotechnologies, and what we as progressives, feminists, and liberals can do to ensure that human biotechnologies develop in a manner consistent with the public interest.

So what does the California stem cell initiative do?

1. It mandates the sale of $3 billion in state bonds to fund stem cell research, an amount that, according to California's Legislative Analyst, will cost the state's citizens $6 billion once interest is figured in.

2. It establishes a new institute that will have complete control of these funds, and specifies the composition of the committee that will run the institute.

3. And it amends the state constitution to include a "right to conduct stem cell research," explicitly including the use of research cloning techniques.

Again, we support embryonic stem cell research, and would like to see it publicly funded, in part because in the U.S. the private sector is virtually unregulated, and biotechnology research needs to be carefully regulated. But this initiative is so over-the-top problematic that it would take the entire 15 minutes I have just to list its flaws. Here are a few:

First, the initiative poses as a project for better health, but in fact it undermines health equity. Given the political climate, and the massive deficit that California already faces, the $6 billion expense will very likely come from cuts in already frayed social programs, including public health. In addition, there are no guarantees that any treatments that are developed as a result of this research would be affordable to the vast majority of people, as they are likely to be extraordinarily expensive. They are being promoted and sold as personalized, individually tailored medicine, an approach to health care that may sound compelling, but that will almost certainly exacerbate health disparities, and create a kind of "designer medicine" for the wealthy.

Second, this is a project that, as the California Nurses Association put it, will "permit wealthy corporate giants to hijack the benefits of the publicly-funded research." The $3 billion of public money will be a boon for the biotechnology sector, whether or not any medical treatments are ever successfully developed. And if there are developments that bring financial return, there is no requirement that any of this be returned to Californians.

Furthermore, the initiative fails to protect against conflicts of interest in the awarding of these huge sums of public money-the kinds of conflicts that Sheldon Krimsky has talked about. In fact it sets up a situation in which conflicts and cronyism are guaranteed. The committee that will steer the stem cell institute is dominated by representatives of biotech companies and research institutions that will be the likely recipients of major grants. It includes representatives of disease advocacy groups, but none of its members represent the broad public interest.

Third, the structures of public accountability and oversight are woefully inadequate. The initiative completely insulates the stem cell institute it sets up from any oversight by the public or elected officials. It allows researchers to modify NIH regulations in such areas as informed consent and protection of research subjects as they see fit. And it actually exempts its research activities from-here I quote from the language of the initiative-"current and future state regulations and laws."

The initiative says it will prioritize a particular aspect of stem cell research-the derivation of stem cells from cloned human embryos-which needs especially careful regulation. If research cloning is carried out on anything like the scale that the initiative's backers suggest, it will require a huge supply of women's eggs. Egg extraction is an invasive procedure, with risks of serious adverse reactions to the powerful hormones that are used to shut down women's ovaries and then hyper-stimulate them. Who are the women that will provide the eggs? It will be poor women and young women who will be the laborers in this market in eggs, because they need the money that will be called "reimbursements for expenses."

The initiative does not provide meaningful regulatory control of the cloned embryos that will be produced. These cloned embryos could be misused as the raw materials, so to speak, for experiments in reproductive cloning, and for eugenic practices such as inheritable genetic modification.

It's fair to ask, if there's this much wrong with the initiative, how did it pass by 59% to 41%?

In addition to riding on anti-Bush sentiment in blue-state California, Prop 71 passed because with $25 million in campaign contribution, almost all from a small group of wealthy corporate donors, its supporters were able to convince voters that stem cells will produce cures for a long list of serious diseases.

All of us certainly hope that cures or therapies are found. But stem cell research is still in a very early stage, and no one yet knows whether the hoped-for treatments will be achieved. In short, the measure passed because a lot of people, including scientists who knew better, made exaggerated and scientifically unsupported claims about stem cell therapies. Many of them stand to become wealthy as a result of the public moneys that companies they have founded are likely to receive.

Of course, it may turn out that the claims for stem cell therapies prove to be true. For the sake of the people suffering from conditions who might be helped, I certainly hope so. But the fact remains that this measure was passed by manipulating people's compassion with irresponsible promises of cures. Now we can expect to see this same approach adopted by advocates of other genetic and reproductive technologies-including many that could open the door to the sorts of eugenic practices that liberals and progressives have long taken the lead in opposing.

So now the initiative is law; it's part of the California constitution. What do those of us in California do? Obviously, we need to shine a bright light on the behind-the-doors decision-making process of the new stem cell governing board, called, ironically, the "Independent Citizens Oversight Committee," or ICOC. Surprisingly, we are receiving some unexpected help in this effort.

Only weeks after the election, a California state senator who was a high-profile campaigner for the initiative, Deborah Ortiz, began saying that the measure has serious defects, and that she's gong to try to fix some of them. In front page news reports this week, Senator Ortiz is talking about introducing legislation that she's calling the "Proposition 71 Public Accountability Act." The defects she lists are ones that sound very familiar to us-she wants to make sure that California recoups the $6 billion it's now bound to hand over, that any treatments that are developed will be affordable to California citizens, that regulations to protect research subjects be put in place, and so on.

The reports about Senator Ortiz's new effort all note that the initiative contains provisions that expressly forbid the sorts of legislated fixes that she is proposing. And the initiative's mastermind and major financial backer, a wealthy real estate developer named Robert Klein, whose son has juvenile diabetes, has more or less told Ortiz, his former ally, to butt out. But Sen. Ortiz says she'll go ahead with the legislation anyway. Of course we wish she'd said these things during the campaign, but better late than never.

Those of you in other states have the opportunity to avoid California's mistakes. Stem cell legislation has been or will be introduced in New York and other states. If California is the exemplar of how not to do it, why not make New York a model for how to publicly fund and publicly regulate stem cell research the right way-responsibly, and in the public interest.

Stem cell research is an important issue in its own right. It raises hopes of medical advances that may alleviate a lot of suffering. It also raises an array of serious concerns-about conflicts of interest, private profit at public expense, gaping holes in regulatory safeguards, exacerbating health disparities, irresponsible hype.

Stem cell research is also an early skirmish in coming battles over other new human biotechnologies, battles that will raise new kinds of issues in addition to these more familiar ones.

The most worrisome prospect is the development and commercialization of genetic and reproductive techniques that could allow the traits of future children to be engineered to specification, and passed on to all subsequent generations. If we permit it to be developed and marketed, this technique, called inheritable genetic modification or "IGM," would be far more expensive than current assisted reproduction, and thus accessible only to the wealthy. It would constitute a new kind of eugenics, not mandated by a government but offered to parents as consumer choices.

A disturbing number of influential scientists and others are openly advocating this kind of market eugenics. They eagerly embrace the notion of a "post-human" future; some actually look forward to a world in which humanity has been engineered into genetic sub-species, which one writer has infamously labeled the GenRich and the Naturals. Those of us who still harbor dreams of human equality and solidarity, of human rights and the common good, are likely to find these projections utterly offensive and very frightening.

What's perhaps even more upsetting than the advocacy itself is the absence of voices telling these eugenic enthusiasts that this is not acceptable. There has been near silence from other scientists. And, I'm sorry to report, a few abortion rights advocates have actually accepted the notion that the eugenic engineering of future generations is an extension of "choice."

The prospect of genetically enhanced children is not one that we face in the "next four years" referred to in the title of tonight's symposium. But we may well face this prospect in the next generation or two. And our approach to it is likely to be informed and shaped by the lessons that we draw from the near-term decisions about technologies like stem cell research.

So what are those lessons? Here are a few that stand out for me:

1. We urgently need to hear progressive voices speak out on human biotech issues, from stem cells to cloning to sex selection to designer babies. In the debates so far, the two most vocal constituencies on this entire set of issues have been the religious right, opposing any technologies involving the destruction of embryos, and on the other side the biotechnology industry, opposing any regulation at all. We need careful consideration of the implications of the new human biotechnologies for social and racial justice, public health and reproductive rights, disability rights, and science in the public interest.

2. A corollary of that lesson: We can't let these issues be monopolized by the right. These issues touch on our values-progressive values of social justice, equality, and solidarity. At a juncture where all of us are aware of the political importance of articulating our core values, the politics of genetic and reproductive technologies in fact provide us with an important opportunity to talk about our core beliefs.

3. We can't approach these issues solely as matters of individual choice. That framework is dangerously incomplete. Human biotechnologies have profound consequences for the world that we will inhabit together; they are issues about the collective conditions in which individuals can flourish, about the common good and the kind of world we want to build.

4. We should also put social justice and the public interest at the center of our approach to the allocation of resources for health care and health research. That means not just "no designer babies," but also "no designer medicine."

5. To the extent that these are issues about reproductive practices, we need to put women and children, not embryos or technologies, at the center of our concerns.

How do we turn those lessons into public policy?

Many Americans might be surprised, but public polices regulating the new human genetic technologies in pretty much the right way have already been adopted in Canada, Australia, most of Europe, and elsewhere. The Canadian Assisted Human Reproduction Act, passed earlier this year, could be a model for the U.S. It takes a comprehensive approach to reproductive technologies and embryo research, and embraces both the private and public sectors. It was championed by women's health advocates, and even accepted by scientists in the Canadian Stem Cell Network. The legislation's preamble explicitly states its core values, which include preventing the commercial exploitation of reproduction, protecting the health and well-being of women and children, and protecting "human individuality and diversity, and the integrity of the human genome."

The Canadian Act specifies a few practices that are prohibited, and others that are allowed with regulation. It prohibits reproductive cloning, "social" sex selection, inheritable genetic modification, and the production of human-animal chimeras. It prohibits payments for surrogate pregnancies and for embryos and gametes, but allows regulated noncommercial surrogacy, and egg and sperm donation. It prohibits research on embryos created solely for the purposes of research, but explicitly allows research involving human embryos that were created in the course of fertility procedures.

Along with working to enact policy, we need to address the hearts and minds of other progressives and liberals, and of a broader swath of people in the U.S. Our work is still in its early stages, but will need to accelerate quickly if we are to keep pace with the rate at which the technologies themselves are being developed.

Please get in touch with us if you are motivated to work on these issues.