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

by Ruha Benjamin

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.

Genres: Science, Race, Nonfiction, History, Medical, Politics, Academic

272 pages, Hardcover

First published May 22, 2013

About the author

Ruha Benjamin is Professor of African American Studies at Princeton University. She specializes in the interdisciplinary study of science and medicine, race and technology, knowledge and power. Ruha is author of People’s Science: Bodies and Rights on the Stem Cell Frontier (Stanford 2013), Race After Technology (Polity 2019), and editor of Captivating Technology: Race, Carceral Technoscience, and Liberatory Imagination in Everyday Life (Duke 2019), as well as numerous articles and book chapters.

Ruha Benjamin received her BA in sociology and anthropology from Spelman College, MA and PhD in sociology from UC Berkeley, and completed postdoctoral fellowships at UCLA’s Institute for Society and Genetics and Harvard University’s Science, Technology, and Society Program. She has been awarded fellowships and grants from the American Council of Learned Societies, National Science Foundation, Ford Foundation, California Institute for Regenerative Medicine, and Institute for Advanced Study. In 2017, she received the President’s Award for Distinguished Teaching at Princeton.

Reviews

[Elari · Rating 4 out of 5]

Ruha Benjamin focuses on the coemergence of novel life science and of rights claims to social equality. In her discussion on participatory science, she borrows a term from Harvard professor Sheila Jasanoff: bioconstitutionalism. She advocates for a higher cognizance of the political and social impacts of scientific progress.

I had a long review which I ended up deleting. I'll just say that this is yet another (really good) book that tells us no decision or position is ever purely ethical, and figuring out which is more ethical than its alternatives is a grueling problem.

[Anna · Rating 4 out of 5]

A great read if you're interested in bioethics, disability rights, reproductive rights and assisted reproductive technology (ART)--or all of those things!

[Obscurenoun · Rating 5 out of 5]

I will put this in my collection with Medical Apartheid, The New Jim Crow, and Killing the Black Body (if the bookstore ever gets around to ordering my copy), which I think give regular folks a glimpse into what goes on within the spheres of power. Their works have been essential to critically interrogating destructive propaganda, some of which has become so pervasive that despite knowing it is based in false logic, we’ve had little defense against it.

These read to me like spy novels, like being a fly on the wall in the room with the generals and politicians making life or death decisions about thousands of lives.

I like the idea of using different disciplines to check the ethics of scientific endeavor especially in an age where the sci-fi horrors of my youth may very well become reality.

It was interesting to think about the logical assumptions we make when we interpret health statistics and recommendations. Race is often conflated with socioeconomic status. Just because a condition is experienced more frequently among a certain racial group doesn’t mean it is inherent to some racial genetic variant.

It is the social implications of race that often determine where we live, the quality of food we can afford, the stresses we have on our lives which have been speculated to cause sometimes maladaptive genetic variation in groups of people but this is not necessarily inherent to race. So before we talk about ‘correcting’ genes, we should be talking about correcting the social ills that leave people without access to adequate food, shelter, and healthcare when there are others who live with endless opulence.

The takeaway is I f we want things to be equitable, we need everyone to be in the room from jump.