Presentation at The Future of Bioethics in a Divided Democracy conference, organized by the Alden March Bioethics Institute, Albany, NY, July 13-14, 2006.

My organization, the Center for Genetics and Society, was founded because of the recognition at the end of the 1990s that liberal and progressive civil society voices were almost completely missing from ongoing discussions among policy makers, bioethicists, and others about the social meanings of human biotechnologies - discussions that were quickly growing more urgent as the pace of technological development accelerated. We called this situation a "civil society deficit," and began working to remedy it.

 

I'm going to

 

1. first say a few words about how CGS got its start and what we've learned about that civil society deficit
2. second, talk just a bit about how it is beginning to change, as liberal and progressive constituencies become involved in human biotech debates, and
3. third, of particular interest at a conference aimed at exploring the divide between liberal and conservative bioethics, talk about some important differences and tensions that are becoming apparent among liberals and progressives on human biotechnology issues

 

CGS and the civil society deficit

 

Before the formal establishment of the Center for Genetics and Society, we convened a series of meetings. We brought together several multi-disciplinary groups of people who were knowledgeable and concerned about the social and political implications of new reproductive and genetic technologies, and who were committed to social, economic, and racial justice; to reproductive rights; and to socially responsible science and environmental protection.

 

At those meetings, we discussed

 

• the speed with which human biotechnologies were developing,
• the inadequacy of the rules and regulations in place to guide their development and use,
• the increasingly commercialized environment in which these developments were taking place, and
• the fact that both the technical and policy situation were not on the radar of the general public, opinion leaders, or policy makers.

 

There was general agreement that some human biotechnologies were likely to yield beneficial applications in the diagnosis and treatment of disease, and that we wanted to support these. But we were also concerned about the potential of these technologies to greatly exacerbate human inequality, both through increasing our already shameful global health disparities; and depending on how the techniques developed, through the potential use of new human genetic and reproductive technologies for eugenic purposes.

 

We were already seeing that the prospect of powerful new reproductive and genetic technologies was triggering a revival of eugenic ideologies by a small but disturbing number of influential scientists and others, including some bioethicists. This was a vision of "better breeding" not through government mandate or authoritarian decree, but as a supposedly inevitable technical advance and the natural play of free markets.

 

When we set up CGS in 2001, we defined our mission as one of "working to encourage responsible uses and effective societal governance of the new human genetic and reproductive technologies." A large part of our work has been aimed at increasing the participation of civil society constituencies in public and policy debates about biomedical, genetic, and reproductive technologies. Toward that end, we have organized or participated in hundreds of conferences, workshops, meetings and briefings, the majority of them with liberal and progressive individuals and organizations, including those working for women's health and reproductive rights; GLBT and disability rights; racial justice and civil rights; environmental protection and animal welfare; consumer advocacy and good government.

 

In nearly all these encounters, we've found a keen interest in the issues raised by human biotechnologies, but uncertainty about how to participate in shaping them, and deep concern that developments are moving at a pace and in a manner that leaves the great majority of people excluded from the debate.

 

[Bioethicists, civil society, inclusion]

 

On the topic of exclusion: I can't help but remark on the demographic imbalances of this conference. I appreciate the organizers for bringing together people across the left-right political spectrum, but it's disappointing to see the lack of diversity and balance among the plenary speakers. The roster of invited speakers is pretty overwhelmingly dominated by - not to put too fine a point on it - white men from academia. I'd thought we were well past the days of counting, but I confess to comparing the numbers of women and people of color among the plenary speakers to the numbers in George Bush's cabinet. By that measure, it doesn't look good for the bioethicists.

 

It's obviously important to address lack of racial and gender balance wherever it occurs. There also seems to be an imbalance here in the types of expertise represented. Most of us are technical or academic experts, but there are many other types of relevant expertise, including social constituency expertise.

 

Given that an important part of the project of bioethics consists of setting the rules for the development and use of powerful, future-shaping technologies, it's clearly important to be as inclusive and democratic as possible. Bioethicists have often functioned as surrogates for democratic participation in decisions about biotechnologies, and in so doing have perhaps perpetuated the civil society deficit on the issues. Though bioethicists typically present themselves as experts rather than as spokespeople, there is a tendency to believe that they are minding the store for the rest of us - which they may or may not be doing, and which of course they have no mandate to do.

 

Bioethical expertise is in some ways a peculiar kind of expertise. Here's what I mean: Think about the kind of involvement we have come to expect in the politics of other powerful technologies. Think, for example, about controversies over what kind of energy technologies to develop - should we emphasize nuclear power or solar power? Should we build large hydro-electric dams? Should we drill for oil in the Arctic?

 

On these issues, we don't consult energy ethicists. We consult academic and policy experts, yes. And we also recognize these as political issues, as decisions that will transform the way many people live and work, that will create winners and losers, that involve some people making decisions that will shape the lives and life chances of others, perhaps on the other side of the world or in future generations.

 

We expect, at the beginning of the 21^st century, that these issues will be widely debated, that environmental, consumer protection, and human rights groups are likely to weigh in, sometimes quite vociferously, that these civil society actors will be cited in the media and participate in conferences, that they will be included in policy debates and decisions.

 

We need similar robust debate, democratic participation, and broad inclusiveness of civil society constituencies in decisions about human biotechnologies. This is a crucial endeavor, but a challenging one. Our democratic processes are imperfect; the mechanisms by which civil society constituencies assert themselves are often messy, we are operating in a politically polarized environment that makes thoughtful deliberation about human biotechnologies difficult, and the combined power of techno-science and the market is daunting.

 

The overall trends are sobering. But the increasing involvement of civil society organizations and opinion leaders in the politics of human biotechnology is a hopeful sign. I'll just mention a few of the constituencies that are beginning to weigh in on these issues.

 

Liberals and progressives in the politics of human biotech

 

First, women's health and reproductive rights advocates. The fact that many human biotechnologies involve reproduction, and that the most controversial biomedical technologies involve human embryos, means that women's health and reproductive rights are inescapably affected by biopolitics. The first impulse of some mainstream feminists has been to embrace these technologies, but this has been far from stable and far from uniform.

 

In 2004, CGS, OBOS and CWPE held a meeting at the Ford Foundation that gathered together 65 women and a few men to discuss the full array of the new reproductive and genetic technologies and their impact on women and communities of color. This meeting connected academics to advocates, and feminist, disability rights and social justice organizations. Many attendees went on to lead their groups to become more involved on these issues.

 

Another example is the California Coalition for Reproductive Freedom's recently established Reproductive Technologies subcommittee, set up as a safe space for CA leaders to debate and explore these issues. One more: CGS worked with PPFA and Smith College on their Reproductive Justice for All Conference so that one of the four major topics of focus was Assisted Reproductive and Genetic Technologies. About 100 people spent two days discussing and debating politics and policies in this area.

 

Stem cells in California. CGS was one of a small number of progressive or liberal groups in California that support ESCR but opposed Proposition 71, the $3 billion stem cell initiative of 2004.

 

The other progressive organizations that opposed Prop 71 were an ad hoc network of women's health and reproductive rights advocates working under the name Pro-Choice Alliance Against Prop 71, and the California Nurses Association - an important ally, with 65,000 members in the state and a public approval rating that consistently stays above 80%.

 

At first it was pretty lonely, and our positions were often misunderstood. But within weeks of the initiative passing, a buyers' remorse began to develop. Now, almost two years later, our criticisms of Prop 71 and its implementation have been not just reported on but editorially echoed in every major newspaper in the state. We've worked with women's health groups and a Democratic state senator on a bill to ensure that women who provide eggs for research are treated as research subjects, and not compensated beyond direct expenses so as to avoid creating a market in eggs. We've worked with good government groups including Common Cause and CalPIRG, with racial justice groups including the Greenlining Institute, with consumer protection groups including the Foundation for Taxpayers and Consumers Rights, and others.

 

Others: Disability rights groups have been out in front on these issues, acutely aware of the history of eugenic targeting of people with disabilities, and concerned that norms of "perfection" could all too easily displace values of care and respect. We co-sponsored a series of events at the New York GLBT Center. Environmentalists have opposed portrayals of efforts to clone endangered species as conservation measures. Animal welfare advocates including the Human Society of America have sharply criticized pet cloning.

 

Liberal values and human biotechnologies

 

As liberals and progressives begin to consider human biotech issues and become involved, differences among them have started to become apparent. These differences or tensions turn on the different emphases they place in three areas:

 

1. balancing personal liberty and individual autonomy with social justice and the common good;
2. determining the kind and amount of enthusiasm or caution appropriate to various genetic, reproductive, and biomedical technologies;
3. deciding whether regulation in these areas is best centered in government or market mechanisms.

 

None of these are absolutes - each requires a balancing act. And these differences are not exclusively about biotechnologies or biopolitics - they crop up in other areas as well. Sometimes, they are tensions not just among those of us to the left of center, but within ourselves.

 

However - the United States is a place where the combination of techno-science and the market is especially powerful, where the commitment to perpetual progress - defined as technological progress - is strong, and where the emphasis is on individual and market-based solutions to social problems. Add to this the polarized politics that have developed as the religious Right stakes out a ground of absolutism around protecting human embryos, and liberals and progressives react, sometimes reflexively, to defend freedom on inquiry. Under these conditions, the skewed and incomplete conversation that has developed around human biotechnology is perhaps no surprise. As Dan Sarewitz puts it:

 

The result is a highly restricted domain of permissible conversation, and an increasing willingness to stake the future of humanity not on our admittedly imperfect processes of negotiating competing values and interests in light of our moral foundations, but instead on the accelerating capacity of science and technology to remake the world in any and every way that it can.

 

All this conspires to create a situation in which social justice, a precautionary sensibility, and a commitment to crafting government regulation and oversight tend to be slighted. I'll conclude with a very few brief remarks about what each of these values counsels on issues of responsible development and use of human biotechnology.

 

Social justice and personal liberty. To promote social justice in the gene age, we need ways to apply needed brakes on two very slippery slopes: one that leads to "designer medicine" and the other that leads to "designer babies."

 

By designer medicine, we mean high-tech therapeutics that will almost certainly be unaffordable except for the very wealthy - for example, the kind of treatments envisioned in the notion of "personal repair kits" that has been used to promote stem cell and cloning research.

 

One problem here comes down to the allocation of the significant resources-talent and money, much of it public funds-that high-tech enhancement would entail. Budgeting is not a zero-sum game, but oughtn't we be prioritizing clean drinking water for the third of the world's population that doesn't have it, or health insurance for the 46 million Americans who don't have that?

 

By designer babies, we mean inheritable genetic modification - the production of children who are genetically "enhanced." This is another kind of procedure that, if successfully developed, would almost certainly be disproportionately available to the wealthy, and would create increased social division, discrimination, and conflict.

 

However far off the technical accomplishments that would permit such experiments, we're faced now with the impact of the stories we tell ourselves about how to improve the human condition. We can tell ourselves, and encourage politically engaged people to believe, that we should be expending our efforts to the production of children with wings and gills and superior intelligence. Or we can commit ourselves to creating social conditions that will improve the life chances of children: clean air to breathe, vaccinations for infectious illnesses, good educations. I believe that the transhumanist story of a glittery techno-utopianism reflects the tragic withering of our collective confidence in human improvement through social change, and makes that withering worse.

 

Techno-enthusiasm vs "critical optimism." The way I understand it, honest skepticism is in fact a hallmark of good science; and I would argue that careful assessment is a hallmark of good technology.

 

It is of course largely meaningless to declare oneself either "for" or "against" technology. Instead, we need to understand and shape how technologies are used, who they benefit, who controls them and whom they control, and, upstream, how they are developed - because social relations are actually built into many technologies.

 

Of course, we enjoy the benefits of many biotechnologies - my eyeglasses, my kid's protection against many infectious diseases, my friends' knee replacements. We also live with the knowledge of the great civilizations that have collapsed because of misuse of contemporaneous technologies, in the shadow of Hiroshima, with severe environmental degradation in many parts of the world, and with the prospect of catastrophic climate change.

 

Human biotechnologies give us - or some of us - the capacity to change our own bodies at a molecular level. Doesn't it make sense to try very hard to get the balance right between progress and precaution?

 

That's not what we're seeing. In the case of stem cell research, we have far too many researchers and their supporters, echoed by politicians and the media, indulging in a level of hype and over-promising that is scientifically embarrassing and ethically irresponsible. In the case of advocates of genetic enhancement and tanshumanism, we have glib dismissal of risks. In his, Introduction to Transhumanism, for example, Nick Bostrom writes this about enhancement technologies, "It would be tragic if the potential benefits failed to materialize because of technophobia and unnecessary prohibitions.

On the other hand, it would also be tragic if intelligent life went extinct because of some disaster or war involving advanced technologies."

 

Government regulation versus market mechanisms or voluntary guidelines.

How do we react to the fact that human biotechnologies are increasingly being developed in an intensely commercial environment?

 

Fifty years ago, Jonas Salk became famous for developing the polio vaccine that put an end to a horrible disease that caused enormous suffering. When news broke that the field trials of the vaccine had been successful, Salk was interviewed by Edward R. Murrow on "See It Now." "Who owns the patent on this vaccine?" Murrow asked. Salk replied: "Well, the people, I would say. There is no patent. Could you patent the sun?"

 

That was then. But even 15 or 20 years ago, scientists were far less likely than they are today to be involved with private industry as consultants, stakeholders, founders. We're now seeing the first generation of biomedical science that's being developed by a cadre of researchers with anything like this level of direct interest in profit-making and corporate gain. This has created a raft of widely acknowledged problem: conflicts of interest, adverse reactions unreported because of proprietary concerns, patent blockages, and most important, a serious under-representation of the public interest.

 

Most scientists remain ethical, responsible, and devoted to expanding knowledge and developing tools to benefit humanity. But in an age of corporate biotechnology, we need to confront conflicts of interest forthrightly. We need to acknowledge that biomedicine is a business, that assisted reproduction is a business, and that progressives historically have championed government oversight and regulation as a necessary means of protecting the public interest. The idea that scientists can regulate themselves doesn't hold up.

 

We have a far greater chance of reaping the benefits of human biotechnologies and avoiding their risks if we strengthen our commitments to social justice and the common good, to a precautionary optimism and what Jonathan Moreno calls "critical optimism," and to responsible government regulation. Whether or not we manage to do this is one of the most consequential questions we face.