People's Science

Bodies and Rights on the Stem Cell Frontier

Ruha Benjamin

• Editore: Stanford University Press
• Anno: 2013
• ISBN:
  9780804786737
• Edizione: 1
• Argomento: Social Sciences
• Categoria: Sociology

Stem cell research has sparked controversy and heated debate since the first human stem cell line was derived in 1998. Too frequently these debates devolve to simple judgments—good or bad, life-saving medicine or bioethical nightmare, symbol of human ingenuity or our fall from grace—ignoring the people affected. With this book, Ruha Benjamin moves the terms of debate to focus on the shifting relationship between science and society, on the people who benefit—or don't—from regenerative medicine and what this says about our democratic commitments to an equitable society.

People's Science uncovers the tension between scientific innovation and social equality, taking the reader inside California's 2004 stem cell initiative, the first of many state referenda on scientific research, to consider the lives it has affected. Benjamin reveals the promise and peril of public participation in science, illuminating issues of race, disability, gender, and socio-economic class that serve to define certain groups as more or less deserving in their political aims and biomedical hopes. Under the shadow of the free market and in a nation still at odds with universal healthcare, the socially marginalized are often eagerly embraced as test-subjects, yet often are unable to afford new medicines and treatment regimes as patients.

Ultimately, Ruha Benjamin argues that without more deliberate consideration about how scientific initiatives can and should reflect a wider array of social concerns, stem cell research— from African Americans' struggle with sickle cell treatment to the recruitment of women as tissue donors—still risks excluding many. Even as regenerative medicine is described as a participatory science for the people, Benjamin asks us to consider if "the people" ultimately reflects our democratic ideals.

CHAPTER ONE

LOCATING BIOLOGICAL CITIZENSHIP

Stem cell advocacy is not a political movement. It is a consumer movement! If you ask people on the street if they support this, they do, not because it is a public health issue, but because it’s a personal health issue.

—Bernard Siegel, stem cell advocate¹

Our parks are closing. Our education budget is being slashed. Our infrastructure goes unrepaired. Cops are being laid off. Our university students’ tuition is shooting through the roof. Kids are being thrown off Medicaid. . . . But the CIRM keeps borrowing from the impecunious to pay for its fat salaries and luxurious buildings.

—Wesley J. Smith, consumer advocate²

“LOCATION, LOCATION, LOCATION!” is the enduring indicator of value with respect to prime real estate; but in a nongeographical sense, it serves to signal social worth as well. Where, on an individual level, one is “located” within crosscutting social hierarchies—for example, whether one is a Hollywood executive with a bevy of top medical specialists on speed dial versus a drugstore clerk who turns to the ER for medical care, and then only with the most unbearable maladies—can be a matter of life or death.

Our position in the social world gives us a particular vantage point with respect to everything from the new organic supermarket moving into our neighborhood to the latest scientific innovation that promises to regenerate our relative’s stroke-induced paralysis. For the executive, the new supermarket is perhaps one more welcomed option; for the clerk, such neighborhood revitalization likely means her rent will increase, forcing her to move out. There is little wonder then that residents in a growing number of transitional neighborhoods throughout the country have attempted to protest the construction of Whole Foods Market stores as a visible symbol of their impending displacement, rightly inferring the inverse relationship between more healthful food options on their doorstep and their ability to keep up with rising property rates. In our enthusiasm for expanding healthful food options as part of serving the collective good, we neglect the larger social context in which goods are brought to market. Even analysts who might otherwise critically attend to these dynamics can be swept up in the promise of regeneration. Sociologist Loïc Wacquant points out this

troublesome trend in recent studies of gentrification, whereby the takeover of working-class districts by middle- and upper-class residents and activities is increasingly presented wholesale as a collective good. . . . By focusing narrowly on the practices and aspirations of the gentrifiers through rose-tinted conceptual glasses, to the near-complete neglect of the fate of the occupants pushed aside and out by urban redevelopment, this scholarship parrots the reigning business and government rhetoric that equates the revamping of the neoliberal metropolis as the coming of a social eden of diversity, energy and opportunity.³

The broader social context is one in which the individualistic logic of free choice is rather costly for those who cannot afford all the upgrades taking place in the public domain. Returning to the issue of regeneration in the biomedical context, one young Filipino American man who lost part of his lung to tuberculosis observed that

the promise of therapeutic treatments derived from stem cell research gives individuals like me a hope for normalcy. Yet, as an immigrant from a low-income family, I can’t stop from cringing at the thought that the low-income and marginalized communities of the state still have no explicit guarantee of access to the promised “cures” of Prop. 71—much less to adequate health care in general.⁴

Another man born with cerebral palsy asked whether “as a Black, disabled activist living on SSI [Social Security Insurance], would this proposition reach my people and other people of color who are wheelchair users because of police brutality? . . . With $3 billion going toward this research, how much will go toward social programs, health care, and the run-down hospitals in our cities?”⁵

By contrast, in the epigraph to this chapter, stem cell advocate Bernard Siegel asserts that proponents of this research are part of a “consumer movement” for more and better choices in treating currently incurable illnesses—a “personal health” as opposed to public health issue. In isolation, who would object to the amelioration of sickness via more effective therapies? But despite numerous physical and symbolic attempts to erect walls, build gates, pave private ways, and create social closures so as to separate “us” from “them,” our life chances and well-being are not simply “personal” but interconnected. We cannot afford to examine any campaign for public underwriting of stem cell research as a movement to produce biomedical goods without locating it within broader systems of power, inequality, and the collective good. The relationship between our social positions and the positions we take on the question of stem cell investment is reinforced by how much power we do or do not have to pull the levers of influence in response to our concerns and interests.⁶ That is, the higher our position in the social landscape, the more the objective world (institutions, policies, laws, and so on) reflects what we hold most dear. So, despite occasional delays, the Whole Foods Market eventually moves into the neighborhood, and residents unable to afford the higher cost of living must eventually move out.

In one of the most organized community campaigns to first resist, then engage, the supermarket company, residents of Jamaica Plain, Massachusetts, joined together in a “Whose Foods? Campaign,” asking the company to sign on to a Good Neighbor Agreement and donate 1 percent of its annual revenue from the local store to fund “local anti-­displacement organizing . . . and the creation and/or preservation of local affordable housing” for the duration of the store’s twenty-year lease. In demanding “a small slice of the pie,” the Whose Foods? Campaign is akin to the efforts of those seeking to establish a mutual relationship between biotech companies that benefit from CIRM (California Institute for Regenerative Medicine) grants and California residents unable to afford future stem cell therapies.⁷ By requiring that royalties be paid to the state, the exacerbation of existing inequities can be partially mitigated.

The Unfolding of Proposition 71

The political experiment that is Proposition 71, in which new technologies in the public domain provide the scaffolding for scientific experiments, is not simply encapsulated in the ballot measure in which citizens cast a vote for or against public investment in stem cell research. The experiment is actually ongoing, conducted in local and episodic⁸ public engagement exercises that attempt to bring together the “right” kind of publics, as imagined by loyal enthusiasts of the science, to determine the ethical and procedural rights and wrongs of the initiative. Rather than contributing to the creation of some underlying social consensus, such engagement is better understood as a series of credibility struggles that are performative and eventful,⁹ especially when the veneer of populism cracks in the face of the “wrong” kind of audience participation.

To identify the civic stakes involved in the California initiative, I take you behind the scenes of three forums in which the “right” public was painstakingly assembled and participation enacted. Then I examine a fourth case, in which the “wrong” kind of public was at the stem cell governing table, and I discuss the negative backlash that ensued revealing the fragility of such participatory arrangements. I draw upon Herbert Gottweis’s examination of public participation in the European Union to suggest that California’s effort to act on behalf of the common good is necessarily a treacherous undertaking when who counts as common and what counts as good are themselves contested.¹⁰ In these participatory episodes, we see how advances in the life sciences are giving rise to new demands and new rights claims—though they are not wholly new, because of how social elites have come to conflate “what is good” with unfettered access to biomedical goods.

Using bioconstitutionalism as a framework by which to understand the relationship between biological and political experiments, California’s novel “right to research,” codified in Prop. 71, must be situated within a civic context that values particular kinds of publics that are, first and foremost, wholly committed to the swift, no-holds-barred advancement of stem cell research. Paradoxically, despite the populist packaging of the initiative, many stem cell enthusiasts view regulations that aim to ensure that future stem cell therapies are affordable as an attack on their personal right to access therapies as soon as possible, because of how such impositions may disincentivize the biotech industry from moving research from “bench to bedside.”

Even so, despite what might seem like obvious class-based differences in the expectations people have with respect to scientific innovation, collectives that might give voice to these competing concerns do not come ready-made. Rather, in the bioconstitutional struggles to follow, we see how the people who argue on behalf of a stem cell consumer movement or social justice movement come together through a process of participatory fashioning, which occasionally breaks down. Even those civic spaces that are created, within which to critique or challenge the initiative, require work to generate sufficient interest in the “goods” of stem cell research; otherwise, why would we want fair access through redistribution policies, such as higher state royalties for biotech companies that use CIRM grants? All stakeholders—both avid stem cell supporters and antagonists—are defined through a process of knitting people’s existing interests and concerns to the promise of this new field.

The point of this discussion is not to adjudicate the relative authenticity of participation, deciding when and where the “real” public is present and what the “real” interests of “the people” are. For many observers, the exclusion of undesired publics started when the proposition’s architect, Robert Klein, crafted what California’s Little Hoover Commission called an “insider’s club” by writing in exemptions to the state’s open meeting laws, guaranteeing that university administrators who were eligible for CIRM grants would also serve on the agency’s governing board, among other procedural arrangements that could fuel conflicts of interest. While such ruses contribute to the overall context of organizational insulation, focusing on them places undue emphasis on procedural questions of transparency and openness rather than asking how particular publics and interests gain currency (or as social theorists call it, “hegemony”) in the first place. How did the architects of the initiative create a populist veneer through actually avoiding (rather than institutionalizing) conflict with subordinate groups, in a context that is technically open but in practice closed?

The Politics of Proximity

On an organizational level, the question of where to locate the stem cell agency (CIRM) was one of the first crucial issues in the practical orchestration of civic participation. Choosing a location, both geographically and in the broader network of organizations, involves considerations of how best to communicate institutional identity, to cultivate legitimacy, to generate resources, and to align oneself with the right sort of publics. Whom or what an organization is close to shapes how it is perceived and what kinds of constituencies have access to it or are excluded. Whereas news reports typically cover medical breakthroughs by taking the public inside laboratories, interviewing scientists and reporting their novel scientific discoveries and techniques, the social domains that scientists themselves rely upon for material support (for example, grants) and symbolic resources (such as legitimacy) often remain hidden. These less visible venues, where nonscientists often join the debate, are a central feature of what social analysts call the “new government of life.”¹¹

If, as one patient advocate observed, California is “the stem cell state,” then the question of where to locate the headquarters of the stem cell agency comes down to a matter of designating the “capital” of the initiative. At first glance this decision may seem to be a mundane bureaucratic exercise like any other, but as we will see, the debate over the location of the headquarters was infused with hopes and anxieties about access to stem cell research and the exercise of other forms of symbolic (status and prestige), social (networks), and economic capital. These other assets facilitate or block structures of oversight, webs of accountability, and economic and scientific exchanges in ways that can generate growth or bring about stagnation in a fledgling agency. Focusing on bricks and mortar, breaking ground, and building walls serves (especially for me as a sociologist, trained to think in terms of social construction) as a window through which to explore how power is made, exercised, and consolidated through seemingly “public participation.” The material construction of the stem cell headquarters and the social construction of public participation in stem cell research go hand in hand.

Leading up to the final vote of the Independent Citizens’ Oversight Committee in Fresno on May 6, 2005, which was in favor of San Francisco’s bid to serve as headquarters of the stem cell agency, tensions had been growing in a series of public meetings held up and down the state. Candidate cities had incorporated all manner of enticement in their application packages in a quest to come out the favorite—everything from, in one account, “free upscale office space, furniture, utilities, business and recreational services, . . . parking, [and] security” to a grander array of perks such as “occasional private jet use.”¹² Among fifteen cities originally in the running, Sacramento, San Diego, San Francisco, and Los Angeles made the short list, the last disqualified late in the process.¹³

In part, one might say that from the perspective of the candidate cities, the decision over the headquarters was an issue of branding: bidders used the reputation of their cities to assert distinction in one sphere or another. Thus, a vote for San Diego, since the city was ranked first in the country as a regional biotech hub,¹⁴ was for a more science-centric approach to the initiative; a vote for Sacramento—the state capital, where any group seeking to influence the legislature has an office—was for a more politics-centric approach. A vote for San Francisco—a liberal, cosmopolitan refuge with the most international flights to Asia—was for a global economics–centric approach to the initiative. San Francisco sought first and foremost to position the new agency as an international player, on a par with other national stem cell initiatives and with sufficient autonomy vis-à-vis the regulatory state apparatus to fund the most cutting-edge science.

In practice, of course, all of the above qualities are important and also interconnected, so the decision was more about what the stem cell field should value most. The competing answers to this question were animated by the relative importance of research sophistication, traditional legislative governance, and global prowess in the agency’s mission. The stem cell agency is now situated in an upscale office complex across from AT&T Park, where the San Francisco Giants play, reminding us how this early vying over siting the headquarters was part of a larger social field infused with existing power relations. In characterizing social action, social analysts regularly draw upon the metaphor of a field, wherein peop...