People's Science: Bodies and Rights on the Stem Cell Frontier - Softcover

Benjamin, Ruha

Softcover

ISBN 10: 0804782970 ISBN 13: 9780804782975

Publisher: Stanford University Press, 2013

Synopsis

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.

About this title

About the Author

Ruha Benjamin is an Assistant Professor of African American Studies at Princeton University, and is a Faculty Associate in the Program on the History of Science, the Center for Health and Wellbeing, the Program in Gender and Sexuality Studies, and the Center for Global Health and Health Policy at Princeton. She has been awarded fellowships by the American Council of Learned Societies, the Harvard Kennedy School of Government's Science, Technology, and Society Program, the National Science Foundation, and the Ford Foundation among others. Ruha is actively engaged in community initiatives that investigate the social impact and meaning of new biotechnologies, and blogs about the broader questions of innovation and citizen science at facebook.com/peoples.science and on Twitter @Peoples_Science. Visit www.ruhabenjamin.com to learn more.

Excerpt. © Reprinted by permission. All rights reserved.

PEOPLE'S SCIENCE

BODIES AND RIGHTS ON THE STEM CELL FRONTIER

By RUHA BENJAMIN

Stanford University Press

Copyright © 2013 Board of Trustees of the Leland Stanford Junior University
All rights reserved.

ISBN: 978-0-8047-8297-5

Contents

Preface....................................................................
xi
Acronyms...................................................................
xv
Introduction: To the Moon..................................................
1
1 Locating Biological Citizenship..........................................
27
2 Whose Body Politic?......................................................
55
3 Eggs for Sale............................................................
79
4 Race for Cures...........................................................
113
5 Depathologizing Distrust.................................................
135
6 Toward Real Utopias......................................................
157
Acknowledgments............................................................
183
Notes......................................................................
189
Index......................................................................
229

CHAPTER 1

LOCATING BIOLOGICAL CITIZENSHIP

Stem cell advocacy is not a political movement. It is a consumermovement! If you ask people on the street if they support this, theydo, not because it is a public health issue, but because it's a personalhealth issue.

—Bernard Siegel, stem cell advocate

Our parks are closing. Our education budget is being slashed. Ourinfrastructure goes unrepaired. Cops are being laid off. Our universitystudents' tuition is shooting through the roof. Kids are being thrown offMedicaid.... But the CIRM keeps borrowing from the impecunious topay for its fat salaries and luxurious buildings.

—Wesley J. Smith, consumer advocate

"LOCATION, LOCATION, LOCATION!" is the enduring indicator of value withrespect to prime real estate; but in a nongeographical sense, it servesto signal social worth as well. Where, on an individual level, one is"located" within crosscutting social hierarchies—for example, whetherone is a Hollywood executive with a bevy of top medical specialists onspeed 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 oflife or death.

Our position in the social world gives us a particular vantage pointwith respect to everything from the new organic supermarket movinginto our neighborhood to the latest scientific innovation that promisesto regenerate our relative's stroke-induced paralysis. For the executive,the new supermarket is perhaps one more welcomed option; for theclerk, such neighborhood revitalization likely means her rent will increase,forcing her to move out. There is little wonder then that residentsin a growing number of transitional neighborhoods throughoutthe country have attempted to protest the construction of Whole FoodsMarket stores as a visible symbol of their impending displacement,rightly inferring the inverse relationship between more healthful foodoptions on their doorstep and their ability to keep up with rising propertyrates. In our enthusiasm for expanding healthful food options aspart of serving the collective good, we neglect the larger social contextin which goods are brought to market. Even analysts who might otherwisecritically attend to these dynamics can be swept up in the promiseof regeneration. Sociologist Loïc Wacquant points out this

troublesome trend in recent studies of gentrification, whereby thetakeover of working-class districts by middle- and upper-class residentsand activities is increasingly presented wholesale as a collectivegood.... By focusing narrowly on the practices and aspirationsof the gentrifiers through rose-tinted conceptual glasses, to thenear-complete neglect of the fate of the occupants pushed aside andout by urban redevelopment, this scholarship parrots the reigningbusiness and government rhetoric that equates the revamping ofthe neoliberal metropolis as the coming of a social eden of diversity,energy and opportunity.

The broader social context is one in which the individualistic logicof free choice is rather costly for those who cannot afford all the upgradestaking place in the public domain. Returning to the issue ofregeneration in the biomedical context, one young Filipino Americanman who lost part of his lung to tuberculosis observed that

the promise of therapeutic treatments derived from stem cell researchgives individuals like me a hope for normalcy. Yet, as an immigrantfrom a low-income family, I can't stop from cringing atthe thought that the low-income and marginalized communities ofthe state still have no explicit guarantee of access to the promised"cures" of Prop. 71—much less to adequate health care in general.

Another man born with cerebral palsy asked whether "as a Black, disabledactivist living on SSI [Social Security Insurance], would this propositionreach my people and other people of color who are wheelchairusers because of police brutality? ... With $3 billion going toward thisresearch, how much will go toward social programs, health care, and therun-down hospitals in our cities?"

By contrast, in the epigraph to this chapter, stem cell advocate BernardSiegel asserts that proponents of this research are part of a "consumermovement" for more and better choices in treating currentlyincurable illnesses—a "personal health" as opposed to public health issue.In isolation, who would object to the amelioration of sickness via moreeffective therapies? But despite numerous physical and symbolic attemptsto erect walls, build gates, pave private ways, and create social closures soas to separate "us" from "them," our life chances and well-being are notsimply "personal" but interconnected. We cannot afford to examine anycampaign for public underwriting of stem cell research as a movement toproduce biomedical goods without locating it within broader systems ofpower, inequality, and the collective good. The relationship between oursocial positions and the positions we take on the question of stem cellinvestment is reinforced by how much power we do or do not have to pullthe levers of influence in response to our concerns and interests. Thatis, the higher our position in the social landscape, the more the objectiveworld (institutions, policies, laws, and so on) reflects what we hold mostdear. So, despite occasional delays, the Whole Foods Market eventuallymoves into the neighborhood, and residents unable to afford the highercost 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," askingthe company to sign on to a Good Neighbor Agreement and donate1 percent of its annual revenue from the local store to fund "local anti-displacementorganizing ... and the creation and/or preservation oflocal affordable housing" for the duration of the store's twenty-year lease.In demanding "a small slice of the pie," the Whose Foods? Campaign isakin to the efforts of those seeking to establish a mutual relationship betweenbiotech companies that benefit from CIRM (California Institutefor Regenerative Medicine) grants and California residents unable to affordfuture stem cell therapies. By requiring that royalties be paid to thestate, the exacerbation of existing inequities can be partially mitigated.

The Unfolding of Proposition 71

The political experiment that is Proposition 71, in which new technologiesin the public domain provide the scaffolding for scientific experiments,is not simply encapsulated in the ballot measure in which citizenscast a vote for or against public investment in stem cell research.The experiment is actually ongoing, conducted in local and episodicpublic engagement exercises that attempt to bring together the "right"kind of publics, as imagined by loyal enthusiasts of the science, to determinethe ethical and procedural rights and wrongs of the initiative.Rather than contributing to the creation of some underlying socialconsensus, such engagement is better understood as a series of credibilitystruggles that are performative and eventful, especially when theveneer of populism cracks in the face of the "wrong" kind of audienceparticipation.

To identify the civic stakes involved in the California initiative, Itake you behind the scenes of three forums in which the "right" publicwas painstakingly assembled and participation enacted. Then I examinea fourth case, in which the "wrong" kind of public was at the stemcell governing table, and I discuss the negative backlash that ensuedrevealing the fragility of such participatory arrangements. I draw uponHerbert Gottweis's examination of public participation in the EuropeanUnion to suggest that California's effort to act on behalf of the commongood is necessarily a treacherous undertaking when who counts ascommon and what counts as good are themselves contested. In theseparticipatory episodes, we see how advances in the life sciences are givingrise to new demands and new rights claims—though they are notwholly new, because of how social elites have come to conflate "what isgood" with unfettered access to biomedical goods.

Using bioconstitutionalism as a framework by which to understandthe relationship between biological and political experiments, California'snovel "right to research," codified in Prop. 71, must be situatedwithin a civic context that values particular kinds of publics that are,first and foremost, wholly committed to the swift, no-holds-barredadvancement of stem cell research. Paradoxically, despite the populistpackaging of the initiative, many stem cell enthusiasts view regulationsthat aim to ensure that future stem cell therapies are affordable as anattack on their personal right to access therapies as soon as possible, becauseof how such impositions may disincentivize the biotech industryfrom moving research from "bench to bedside."

Even so, despite what might seem like obvious class-based differencesin the expectations people have with respect to scientific innovation,collectives that might give voice to these competing concerns donot come ready-made. Rather, in the bioconstitutional struggles to follow,we see how the people who argue on behalf of a stem cell consumermovement or social justice movement come together through a processof participatory fashioning, which occasionally breaks down. Even thosecivic spaces that are created, within which to critique or challenge theinitiative, require work to generate sufficient interest in the "goods" ofstem cell research; otherwise, why would we want fair access throughredistribution policies, such as higher state royalties for biotech companiesthat use CIRM grants? All stakeholders—both avid stem cellsupporters and antagonists—are defined through a process of knittingpeople's existing interests and concerns to the promise of this new field.

The point of this discussion is not to adjudicate the relative authenticityof participation, deciding when and where the "real" publicis present and what the "real" interests of "the people" are. For manyobservers, the exclusion of undesired publics started when the proposition'sarchitect, Robert Klein, crafted what California's Little HooverCommission called an "insider's club" by writing in exemptions to thestate's open meeting laws, guaranteeing that university administratorswho were eligible for CIRM grants would also serve on the agency'sgoverning board, among other procedural arrangements that could fuelconflicts of interest. While such ruses contribute to the overall contextof organizational insulation, focusing on them places undue emphasison procedural questions of transparency and openness rather than askinghow particular publics and interests gain currency (or as social theoristscall it, "hegemony") in the first place. How did the architects of theinitiative create a populist veneer through actually avoiding (rather thaninstitutionalizing) conflict with subordinate groups, in a context that istechnically open but in practice closed?

The Politics of Proximity

On an organizational level, the question of where to locate the stem cellagency (CIRM) was one of the first crucial issues in the practical orchestrationof civic participation. Choosing a location, both geographicallyand in the broader network of organizations, involves considerations ofhow 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 perceivedand what kinds of constituencies have access to it or are excluded.Whereas news reports typically cover medical breakthroughs by takingthe public inside laboratories, interviewing scientists and reporting theirnovel scientific discoveries and techniques, the social domains that scientiststhemselves rely upon for material support (for example, grants)and symbolic resources (such as legitimacy) often remain hidden. Theseless visible venues, where nonscientists often join the debate, are a centralfeature of what social analysts call the "new government of life."

If, as one patient advocate observed, California is "the stem cellstate," then the question of where to locate the headquarters of thestem cell agency comes down to a matter of designating the "capital" ofthe initiative. At first glance this decision may seem to be a mundanebureaucratic exercise like any other, but as we will see, the debate overthe location of the headquarters was infused with hopes and anxietiesabout access to stem cell research and the exercise of other forms ofsymbolic (status and prestige), social (networks), and economic capital.These other assets facilitate or block structures of oversight, websof accountability, and economic and scientific exchanges in ways thatcan generate growth or bring about stagnation in a fledgling agency.Focusing on bricks and mortar, breaking ground, and building wallsserves (especially for me as a sociologist, trained to think in terms ofsocial construction) as a window through which to explore how poweris made, exercised, and consolidated through seemingly "public participation."The material construction of the stem cell headquarters andthe social construction of public participation in stem cell research gohand in hand.

Leading up to the final vote of the Independent Citizens' OversightCommittee in Fresno on May 6, 2005, which was in favor of San Francisco'sbid to serve as headquarters of the stem cell agency, tensions hadbeen growing in a series of public meetings held up and down the state.Candidate cities had incorporated all manner of enticement in theirapplication packages in a quest to come out the favorite—everythingfrom, in one account, "free upscale office space, furniture, utilities, businessand recreational services, ... parking, [and] security" to a granderarray of perks such as "occasional private jet use." Among fifteen citiesoriginally in the running, Sacramento, San Diego, San Francisco, andLos Angeles made the short list, the last disqualified late in the process.

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

In practice, of course, all of the above qualities are important andalso interconnected, so the decision was more about what the stem cellfield should value most. The competing answers to this question wereanimated by the relative importance of research sophistication, traditionallegislative governance, and global prowess in the agency's mission.The stem cell agency is now situated in an upscale office complex acrossfrom AT&T Park, where the San Francisco Giants play, reminding ushow this early vying over siting the headquarters was part of a largersocial field infused with existing power relations. In characterizing socialaction, social analysts regularly draw upon the metaphor of a field,wherein people compete over symbolic, social, and economic capitalwithin predetermined parameters and according to prescribed rules.In recent examinations of public participation, analysts also point to theway in which the rules of the game—"the way in which a problem orissue can and should be legitimately framed and publicly handled—arethemselves the subject of political deliberation and struggle."

In explaining the rationale behind the final decision, CIRM boardmember Jean Fontana explained how the decision was a reflection ofthe members' vision of the institute not as a place that "roboticallyprocess[ed] grant applications" (that is, not one that was science-centric)but as one "providing national or international leadership with respectto cutting-edge thinking about how to defeat these diseases."Robert Klein, architect of Proposition 71 and then chair of the CIRM,explained that "This is to lead the world. It is to lead the nation, andthose resources [referring to the free conference facilities provided bySan Francisco] are vital to it." He goes on to depict San Franciscoas the most cosmopolitan of the options, whose facilities could housethousands of people "from all over the world"; a site so liberal and supportiveof stem cell research that even top members of the religiouscommunity formally supported the city's bid. He envisioned the institute,based in San Francisco, as sufficiently open to the internationalstem cell community and sufficiently insulated against critics of thenew agency. "Authors of the initiative, wary of government interference,made CIRM's funding virtually independent from state government ...California responded by creating a safe harbor, free of political influence,for scientists to conduct such research. The political climate hassince reversed" since the Obama administration loosened restrictionson the stem cell field.

(Continues...)

Excerpted from PEOPLE'S SCIENCE by RUHA BENJAMIN. Copyright © 2013 Board of Trustees of the Leland Stanford Junior University. Excerpted by permission of Stanford University Press.
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Edition details

• Publisher: Stanford University Press
• Publication date: 2013
• Language: English
• ISBN 10: 0804782970
• ISBN 13: 9780804782975
• Binding: Paperback
• Edition number: 1
• Number of pages: 272