How should we weigh the costs and benefits of scientific research on humans? Is it right that a small group of people should suffer in order that a larger number can live better, healthier lives? Or is an individual truly sovereign, unable to be plotted as part of such a calculation?
These are questions that have bedeviled scientists, doctors, and ethicists for decades, and in Pain, Pleasure, and the Greater Good, Cathy Gere presents the gripping story of how we have addressed them over time. Today, we are horrified at the idea that a medical experiment could be performed on someone without consent. But, as Gere shows, that represents a relatively recent shift: for more than two centuries, from the birth of utilitarianism in the eighteenth century, the doctrine of the greater good held sway. If a researcher believed his work would benefit humanity, then inflicting pain, or even death, on unwitting or captive subjects was considered ethically acceptable. It was only in the wake of World War II, and the revelations of Nazi medical atrocities, that public and medical opinion began to change, culminating in the National Research Act of 1974, which mandated informed consent. Showing that utilitarianism is based in the idea that humans are motivated only by pain and pleasure, Gere cautions that that greater good thinking is on the upswing again today and that the lesson of history is in imminent danger of being lost.
Rooted in the experiences of real people, and with major consequences for how we think about ourselves and our rights, Pain, Pleasure, and the Greater Good is a dazzling, ambitious history.
In a recent piece on the Somatosphere blog, historian Laura Stark describes the making of “vulnerable populations” in medical experimentation. Currently writing a book on the emergence of “normal control” subjects in medical research, Stark uses her research on LSD experimentation at the US National Institutes of Health post-WWII to discuss the idea of “vulnerable populations.” The above video features excerpts from some of Stark’s oral history interviews with research subjects used as “normal controls” in this research.
As she describes in “How to make a “vulnerable population”,”
The category of the “vulnerable population” is itself a product of modern (American) bioethics, which invented the concept in its recent vintage and gave it specific meaning in public parlance. The field of modern bioethics emerged in the 1960s and 1970s, and in the post civil-rights period, the bioethical concept of the “vulnerable population” was coded with contemporary rights-based concerns: about minorities, about prisoners, and more. The specific meanings and people associated with “vulnerable populations” were embedded in 1970s human-subjects regulation, as well as in popular discourse….
The concepts of modern bioethics operate at another level, too. Ian Hacking coined the term “moral kinds” to tag what he called meta-ethical issues that people—including scholars—come to embody. We are working to develop Ian Hacking’s framework to show how law (especially U.S. human-subjects regulations) shapes both the memory practices of historical actors and the interpretive practices of present-day scholars. In sum, we are interested in how the concepts of bioethics, such as “vulnerable populations” codified in 1974 and later extended beyond the United States, have narrowed the range of possibilities available to scholars for interpreting empirical evidence. We like Hacking’s approach because it offers a way to investigate how the governing moral sensibilities of a specific time and place both constrain and liberate scholars themselves. The secular, North American, rights-revolution ethos of modern bioethics, we suggest, limits how questions about research practices in the human sciences are conceptualized, and can deflect questions about the historicity of the discipline of bioethics as a knowledge-making enterprise in its own right. We aim to explore medical knowledge-making alongside the ontology of modern bioethics—to ask how, when, where, and with what effects the terms and priorities of this expert domain developed. In doing so, we hope to capture a fuller repertoire of institutions, sensibilities, and activities that eventually came to constitute modern science and biomedicine.