Inside the Stem Cell Shell Game

In 2004, after years of impediments to stem cell research imposed by the federal government, California voters approved a ballot referendum that created a $3 billion workaround, the California Institute of Regenerative Medicine (CIRM).  Supported by tax revenues and reporting to a governing body called the Independent Citizens’ Oversight Committee made up of representatives from the biotech industry, patient advocacy groups, and academic and not-for-profit labs, CIRM’s mission is to

support and advance stem cell research and regenerative medicine under the highest ethical and medical standards for the discovery and development of cures, therapies, diagnostics and research technologies to relieve human suffering from chronic disease and injury.

In that statement, and in its frequent public pronouncements, CIRM gives no recognition to the controversies that accompanied its foundation, nor to any ongoing conflicts surrounding stem cell research.

For a full account of these issues, we can turn to Ruha Benjamin’s nuanced and incisive investigation, People’s Science: Bodies and Rights on the Stem Cell Frontier, published this month by Stanford University Press.  Benjamin, assistant professor of Sociology and African American Studies at Boston University, carried out extensive fieldwork for the project, attending CIRM hearings; studying patients and physicians in a sickle cell clinic; visiting prime movers behind Proposition 71, the referendum that established CIRM; and interviewing politicians, healthcare activists, social justice and women’s rights advocates (including members of the CGS staff), legal specialists, and researchers in the biotech industry.  In this way, she was able to identify and illuminate the tensions at play in the formulation of CIRM’s standards, policies, and research aims and protocols.

Benjamin views stem cell technology through a co-production lens, seeing the application of the technology, and the results it yields, as shaped by an ongoing process in which both scientists and various publics participate. Indeed, the very structure of the California initiative, coupling citizens’ oversight with a granting arm, seems designed to embody co-production and signal it as a primary value. But Benjamin repeatedly reveals how power relations have skewed the process in favor of technological elites, and how problematic assumptions about race, ethnicity, gender, and class have undercut the likelihood that the fruits of CIRM-funded stem cell research will reach segments of the California population already underserved by the healthcare industry. Writes Benjamin,

Compared with the old, cloistered model of science, the initiative and its governing structure appear radically inclusive: approval is by the voters, funding by taxpayers, and governance by representatives of the public. Yet it still does not fully address the concerns and expectations characteristic of the participatory trend in science development.

In fact, Benjamin argues, conflict over research priorities and access to the technology has been suppressed through a “pro-cures” bias that emphasizes the benefits of stem cells to individuals and families, without including broader social concerns.  By conducting a campaign that encouraged Californians to identify with – or identify themselves as members of – biological groups defined by disease type (that is, Parkinson’s, sickle cell anemia, diabetes, and so on), proponents of Proposition 71 effectively discouraged public discussion of alternative framings that involve, among other things, injustices surrounding access to medicine in the state and concerns of various disability communities.  

Benjamin views this “strategic fabrication and mobilization of a particular kind of consenting public” as problematic. CIRM has sought to minimize attention to risks, to alternative research priorities, and to scientific profit motives in order to “insulate the science of stem cell research from impinging political values.” In other words, “public participation” has been a shell game meant to misdirect attention so that the stem cell industry could pursue its agenda.

Benjamin provides insights especially into how the oversight committee conceptualized the role of one essential constituency: women who would provide eggs for use in crafting embryos for use in stem cell research. She writes that, “depending on who one imagines women are in this context – bioworkers who supply eggs for research, or a protected class of female research subjects – how one seeks to implement ethical research shifts dramatically.”  

Benjamin’s excerpts from multiple discussions by CIRM’s ethical standards committee demonstrate how demand for a steady stream of eggs and embryos for research was recast in terms of the right of all women to participate in human subjects research. Diversity and equality were held up as goals dictated by the logic of rights, leading to lengthy discussions in which some committee members voiced paternalistic and classist views about how to ensure participation by a diverse pool of women. At the same time, as Susan Fogel of the Pro-Choice Alliance for Responsible Research pointed out, the committee’s focus on the “right to donate” came at the expense of discussion of “how women could provide ‘informed consent’ to participate [in egg harvesting for stem cell research] when not even the researchers were fully informed about all the possible effects of the procedure.”

Benjamin concludes that for medical technologies to become truly beneficial, it is imperative that researchers expose, rather than attempt to conceal through rhetorical framings, the shortcomings, risks, and uncertainties surrounding their work, and acknowledge the structural inequalities inherent in American healthcare. Ethical arguments that center on individual rights can obscure the larger social realities of who actually receives the benefits of technologies. Benjamin calls for more widespread application of social justice principles in decision-making and greater power-sharing.  

Such shifts ultimately can come about only with significant revisions to the view of science and technology as inevitable and as operating above or outside social spheres. In the final chapter, “Toward Real Utopias,” Benjamin marshals a number of thinkers, including political scientist Langdon Winner, educator Farzam Arbab, sociologist Erik Wright, and law professor David Winickoff, who have thought deeply about how to develop more inclusive and responsive mechanisms for social deliberation and change. Here, notwithstanding the worth of her sources, one wishes that Benjamin had devoted more space to her own synthesis of the issues. 

That said, the frameworks for action she lays out are based on a recognition that scientific values should not ipso facto prevail over social ones; that institutions must reconfigure themselves as “learning organizations” rather than agents of the prevailing socioeconomic status quo; and that collective well-being should be privileged above paradigms of scientific “progress” – and in this regard, she suggests inspiring ways forward.  

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Gina Maranto is Director of Ecosystem Science and Policy and coordinator of the Environmental Science and Policy program at the University of Miami's Leonard and Jayne Abess Center. She is the author of Quest for Perfection: The Drive to Breed Better Human Beings (1996).