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

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

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

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


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.


As a social scientist interested in learning how science and technology can serve as a window onto broader questions of health, equity, and justice, I have often felt pressured to bracket my personal experiences so as not to “taint” my analytic gaze. This, despite the fact that those we might call non–social scientists, who practice the “hard” disciplines, are socialized within particular cultural milieus and known to bring their personal biographies into the lab. I inevitably still struggle to study the social world while caring deeply about what kind of world we bring into being, and so I have worked to sharpen an objectivity grounded in selfreflection, one by which I take stock of my experiences, assumptions, and commitments so that I can produce a more complete and contextualized representation of my research subject.

As life would have it, a week before the final revisions of this manuscript were due, my father was rushed to the hospital with strokelike symptoms. Having already undertaken the massive task of learning to walk and work again after his left side was paralyzed due to a stroke three years ago, here he was again: in a small hospital room at CedarsSinai, where neurologists were trying to figure out an effective course of treatment. This time around there was one crucial difference. After his first stroke, my dad’s employer-based health insurance covered the multiple tests, treatment, and physical therapy that allowed for his slow recovery. But this time, working in a new and precarious line of work, he was uninsured. So the longer, more substantial, and perhaps more effective his treatment turns out to be, the bigger and more burdensome the bill that awaits him when he eventually checks out of the hospital.

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