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

Benjamin, Ruha

Softcover

ISBN 10: 0804782970 ISBN 13: 9780804782975

Verlag: STANFORD UNIV PR, 2013

Inhaltsangabe

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.

Über diesen Titel

Über die Autorinnen und Autoren

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.

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.

Auszug. © Genehmigter Nachdruck. Alle Rechte vorbehalten.

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...

Details zur Ausgabe

• Verlag: STANFORD UNIV PR
• Erscheinungsdatum: 2013
• Sprache: Englisch
• ISBN 10: 0804782970
• ISBN 13: 9780804782975
• Einband: Taschenbuch
• Anzahl der Seiten: 249
• Kontakt zum Hersteller: Mare Nostrum Group B.V.; gpsr@mare-nostrum.co.uk; ; Doelen 72; Breda; 4831 GR; Niederlande