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How to make a “vulnerable population”

“They used my ass and took advantage of me.” This was the story of Eddie Flowers, a former drug addict used in LSD experiments during the 1950s. Leaning forward, forearms on desk, Flowers spoke into the microphone on Capital Hill during the 1975 U.S. Senate hearings into secret government-sponsored research (known as the Church Committee hearings). Flowers died in 2009 and continued to regard his testimony to the Church Committee as the turning point in his self-understanding as a member of a vulnerable population who was exploited in U.S. National Institutes of Mental Health (NIMH) LSD studies in the 1950s.

“Some of those shots, some of those tests scared me to death. I mean they scared me actually.” This was the story of Wilmer Wedel, a former Voluntary Service worker for the Mennonite Church who was also used in NIMH’s LSD experiments during the 1950s. Leaning back from the dining table at his ranch house in rural Kansas, it was a story Wilmer Wedel told me in 2011 in which he insisted that he was not exploited despite his fear and powerlessness. Wilmer Wedel was part of a research project that was similar in circumstance to that of Eddie Flowers (same drug, same sponsor, same decade, shared researchers, different locations).

Figure 1: Dr. Kornetsky with Carolyn and Don Braun

Figure 1: Dr. Kornetsky with Carolyn and Don Braun

But compared to Eddie Flowers, Wilmer Wedel’s retrospective assessment of his experience was positive: he was not mistreated, vulnerable or exploited.

These two stories represent a broader set of accounts about people’s experiences in postwar medical experiments that diverge—but diverge in a patterned way. In a recent article in the Social History of Medicine, Nancy D. Campbell and I explain why.

I study medical experimentation (its practice, experience, and organizational structure), and am currently writing a book on the healthy people used as “normal control” subjects at the U.S. National Institutes of Health’s Clinical Center between the time it opened in 1953 and 1980, when the first “Normal” died while on study at the Clinical Center. Wilmer Wedel was one of more than 100 former “volunteers” I interviewed as part of this project. Countway Library for the History of Medicine is now making the full “vernacular archive” of interview transcripts, audio files, pictures, and ephemera I collected available online for anyone to use.

Figure 2: Consent form, W. Dale Horst

Figure 2: Consent form, W. Dale Horst

Nancy D. Campbell was a byline to me until 2010, the author of indispensable books on the history and practice of addiction research that I had long admired. One of the main sites Nancy studied was the U.S. Public Health Service’s Addiction Research Center (ARC) in the middle of the twentieth century. We met at a workshop in 2010 and have been writing and talking ever since.

Figure 3: Table detailing effects of lysergic acid diethylamide on pulse, respiration, and body temperature.  Sokoloff, et al, Table 1.

Figure 3: Table detailing effects of lysergic acid diethylamide on pulse, respiration, and body temperature. Sokoloff, et al, Table 1.

Nancy and I studied parallel sites and similar cases: NIMH medical experiments on psychotropic drugs using human subjects in the mid-twentieth century. More importantly, our work shared the same premise: that there is no true, original experience that can be captured in retrospective accounts. Instead, people’s accounts of medical experiments are products of the moment in which they were created, be it 1955, 1975, or 2011. What interested us about our two cases was how participants’ understanding of themselves and their experiences in LSD experiments during the 1950s either changed or remained the same over time.

Nancy and I compared the institutional logics of the organizations that allowed addicts and Anabaptists to serve in NIMH’s LSD studies in the 1950s, as well as the various accounts the people gave over the decades regarding their experiences (accounts given for many audiences, we are aware). Eddie Flowers was one of hundreds of federal prisoners used in addiction studies at NIMH’s Addiction Research Center housed within the prison in Lexington, KY. Wilmer Wedel was one of hundreds of Anabaptist youths who moved into NIMH’s wards at the Clinical Center in Bethesda, MD to carry out Voluntary Service work as a “normal control,” one of several options the Mennonite church offered for peace workers and conscientious objectors. Nancy and I found that while the self-understandings of the post-addict prisoners shifted and came to be expressed in terms provided by modern American bioethics, the self-understandings of the Christian service workers stayed the same over time, articulated in terms of the institutional logic of their churches. Anabaptists described their experiences as religious work and drew on a shared rhetoric of Christian witness through elective, willing sacrifice for others. They enacted their religious and political self-understandings by cultivating the experience of suffering. We took the divergence between our cases not as a shortcoming of the evidence, but as an empirical puzzle that deserved to be explained.

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. As a consequence, a new understanding of past experiences came into being for some people (like Eddie Flowers, a post-addict prisoner) but fit awkwardly with the institutional logic that brought other people into experimental settings (like Wilmer Wedel, a Christian service worker). For White religious service workers, the world of their churches and religious lives defined the character of their experience in LSD research, even upon reflection decades later. They stand in contrast to Eddie Flowers, for example, who recognized himself in 1975 and again in 2004 as a modern bioethical “human subject” when he cast back to the 1950s—when he had been a recovering drug addict and a Black federal prisoner.

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.[i] 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.

Figure 4: I-W's contribute to medical research

Figure 4: I-W’s contribute to medical research

We are in debt to the excellent recent studies that take concepts of modern bioethics as historical products to be studied together with biomedicine.[ii] Our projects have also been inspired by the mind-bending recent work in psychedelics.[iii] At this stage, more than ever, we are eager to shift and refine our own views, and to learn about other scholars working in the same direction.

It is an effort we hope to continue in conversation with readers of Somatosphere who are pressing at the edges of critically engaged moral anthropology; concerned about the limits of formal modern bioethics; interested in ongoing debates about the ontological turn; and querying the nature of evidence of experience. We hope the conversation continues.

 

Notes

[i] Hacking, Ian. “Two Kinds of ‘New Historicism’ for Philosophers.” New Literary History 21, no. 2 (1990): 343. doi:10.2307/469257.

[ii] Cooper, Melinda, and Catherine Waldby. Clinical Labor: Tissue Donors and Research Subjects in the Global Bioeconomy. Durham: Duke University Press Books, 2014. Reubi D (2013) . “Re-moralising medicine: The bioethical thought collective and the regulation of the body in British medical research.” Social Theory and Health vol. 11, (2) 215-235.

[iii] Langlitz, Nicolas. Neuropsychedelia: The Revival of Hallucinogen Research since the Decade of the Brain. Berkeley: University of California Press, 2013. Dyck, Erika. Psychedelic Psychiatry: LSD from Clinic to Campus. Baltimore, Md.: Johns Hopkins University Press, 2008.

 

Laura Stark is author of Behind Closed Doors: IRBs and the Making of Ethical Research (Chicago 2012) and other work on medicine, morality and the modern state in global context. She is on faculty at Vanderbilt University’s Center for Medicine, Health, and Society.


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