Lorna Rhodes argued in a 2001 article entitled “Towards an Anthropology of Prisons” that we as a discipline have largely neglected the prison as a subject of anthropological attention. Loic Wacquant named this phenomenon “the curious eclipse of prison ethnography” among American anthropologists. In trying to understand the reasons behind such elisions, both Rhodes and Wacquant mention bureaucratic impediments as one of several factors that prevent more ethnographic research from being conducted in and around prisons and their community extensions.
For the past several months, I have forayed into the world of IRBs in order to try to get approval to conduct my dissertation research on prisons and addiction. Consequently, I have been spending a lot of my time recently thinking about what IRBs mean for social scientists interested in working with oppressed and socially marginalized groups of people. Following on Rena Lederman’s insightful piece on IRBs, I hope to use my current experience with research bureaucracies to tease out some of the contradictions, lessons to be learned, and implications of the current IRB apparatus; to re-think what “vulnerability” and “justice” entail in theoretical and practical terms; and to consider the implications and consequences of the time spent engaging with the IRBs. What is the relationship—if any—between the IRB and our attempts at a more engaged and relevant anthropology?
My dissertation research seeks to understand the interstices of addiction and incarceration as they play out in the lives of women with opiate addiction here in Massachusetts as the “War on Drugs” rages on. As both a medical student and a graduate student in anthropology, I find addiction a compelling subject for its unique constellation of biomedical, moral, sociopolitical and legal aspects. A focus on drug use and policies around addiction—in clinics, in the streets, in the prisons—allows me to look simultaneously at the programs and policies of the powerful as well as the emotional and mental life of the individuals affected by these policies.
Since one of my ‘hats’ is as a medical student, I have probably had an easier time gaining access to the local jail than medical anthropologists otherwise might (see Scott Chenault’s interesting piece on how to gain access to the prisons by working as a guard). Working in a jail infirmary several years ago, I came to wonder how our societal attitudes towards addiction, punishment, responsibility and discourses of morality and worthiness played out in the lives and experiences of incarcerated women with addiction. It seemed that very few people had attempted to conduct an experience-near, longitudinal study that sought to understand women’s experiences both inside and outside the prison.
Like other graduate students, I had flirted with several different potential dissertation topics based in a number of places. For example, I thought it might be interesting to conduct dissertation fieldwork on drug use, addiction and incarceration in South Africa, especially as drug use was increasingly seen as a social problem there. However, I had done my undergraduate anthropology thesis on HIV and “conspiracy theories” in New York State prisons, and I felt that a more in-depth study related to prisons could present not only a number of interesting intellectual problems, but also had a sense of potential practical and political significance. I felt morally compelled to work here at home, in the epicenter of the world’s mass incarceration phenomenon (as opposed to the prisons of Rwanda and Siberia, as my one of my mentors — Paul Farmer — had half-jokingly suggested when I consulted him for advice about doing my research in a carceral setting).
I furthermore hoped to be able to practice medicine in a community where I had conducted my fieldwork. So spending time immersed in understanding addiction, drug treatment and incarceration in Massachusetts seemed appealing. We also teach undergraduate students at Harvard (in a class on “biosocial” perspectives in global health co-taught by Arthur Kleinman, Paul Farmer, Anne Becker and Salmaan Keshavjee) that “global health” is a lens or a set of paradigms that can be applied to a wide variety of geographic locations and sociopolitical contexts, including “here at home”; we encouraged students to pursue research interests related to asthma in Spanish Harlem or suicide prevention programs among Native-American adolescents.
Little did I know how difficult enacting such a study “here at home” would actually be. I had girded myself for a battle, but I had very little sense of what I was actually getting into. When Rhodes and Wacquant both called for more ethnographies of the prison, they noted that there were some formidable obstacles. Rhodes wrote of the “inaccessibility and the opacity of the prison” that “make ethnography difficult”; she argued that “restraints imposed on research by prison staff may be similarly folded into the process through which the ethnographer comes to appreciate the larger dynamics of restraint governing these institutions (cf. Waldram 1998)” (2001: 77). Wacquant laid out what he perceived to be some of the specific barriers to prison ethnography, including, “questions of access and funding, the professional organization of academe, the lowly social and therefore scientific status of the object of investigation, and the (mis)use of the military metaphor of ‘collateral damage’” (2002: 371). He noted that gaining access to prisons and jails, while admittedly variable and generally difficult, was important, but that a focus on gaining access to the prisons “must not blind us to the impediments that lie not on the side of the carceral bureaucracy but squarely on that of social science” (2002: 387, my emphasis). Yet Wacquant offered little in the way of practical advice in addressing the concerns that young researchers might have with regards to IRBs and research bureaucracies related to prison studies.
Prisoners—like children, pregnant women, neonates and fetuses—are considered a special subject group of research due to sordid and extensive histories of widespread experimentation on captive, coercible and vulnerable populations. During the peak of research on prisoners in the early 1970s, more than 90% of phase I investigational drugs were being tested on prisoners (ACHRE 1996: 273). One of the most well documented federally sponsored experiments was the case of Statesville Prison in Illinois, where investigators were interested in measuring radium ingested through drinking water and in finding a cure for malaria (Hoffman 2000). Another case documented by Allen Hornblum in Acres of Skin took place at the Holmesburg State Prison, where various dermatologic chemicals and radioactive substances were administered to prisoners for decades under the purview of University of Pennsylvania researcher and dermatologist, Dr. Albert Kligman.
An expansive regulatory framework arose in response to the publicity around such abuses in the prisons and after Tuskegee, including the National Research Act of 1974 and the 1976 Report and Recommendations: Research Involving Prisoners, which were largely prohibitive in nature. The major ethical questions involved in doing research with a captive population centered around whether prisoners could give informed consent and also whether they bore a fair burden of the research and received a fair share of the benefits of research. In 2006, the Institute of Medicine was asked to re-examine and update the ethical and legal framework for federal research conducted in prisons. Lawrence Gostin, one of the lead authors of the IOM committee, noted the problem concisely in a JAMA article, writing that “federal oversight of research in prisons, therefore, is either too restrictive (effectively impeding responsible research) or inapplicable (opening the door to exploitation or abuse)” (2007: 737).
The question of vulnerability is central to IRB and ethical concerns. One of the major international ethical bodies to address the question of vulnerability in prison research was the Council for International Organizations of Medical Sciences (CIOMS). They defined “vulnerability” as “a substantial incapacity to protect one’s own interests owing to such impediments as lack of capability to give informed consent, lack of alternative means of obtaining medical care or other expensive necessities, or being a junior or subordinate member of a hierarchical group” (2002: 10). CIOMS further articulated that vulnerable persons “may have insufficient power, intelligence, education, resources, strength, or other needed attributes to protect their own interests” (2002: 42). Prisoners often fall into many of these categories at once—an unequal and hierarchical power dynamic, lack of education, lack of access to alternative sources of medical care, lack of financial and social resources, as well as structural racism and class disparities—but these factors are not necessarily confined only to prison populations.
With my IRBs (I have submitted several, to various institutions across the state in order to conduct my research), I have seen a wide-range of concerns related to vulnerability and to the special status of “prisoners.” For example, I was told by one IRB that if someone in my study who was not incarcerated (a group of women in the community with histories of opiate addiction) became incarcerated, I would have to inform the IRB “before her participation continues, since we must then apply the regulations regarding research involving prisoners.” Technical accounting aside, this woman’s “vulnerability”—in practical terms, her education, power, resources, life history, social supports—was probably unchanged from the days, months, even years before she became physically incarcerated. What does the reporting of someone’s changed status regarding incarceration to the IRB actually entail, practically speaking? Increased protections? More careful auditing? A greater awareness of the coercive potential of her continued participation in my study?
I also encountered some of the more typical “fieldwork” concerns and lack of general understanding of ethnographic methods. In response to my attempt at being honest about the nature of ethnographic engagement—saying that I hoped to conduct participant observation with my key informants as they sought treatment upon release from prison—the IRB asked me to “provide documentation of permission from those sites” (such as halfway houses or drug treatment programs that a woman might seek out). I felt somehow at fault for not explaining the nature of anthropological inquiry in adequate language for a lay audience: that it, that this research was prospective, longitudinal research tailored to individual women, and that a big part of my research was by nature contingent and situational.
Rena Lederman, in her blog piece about the IRB process and anthropology, noted that “what also needs to go on is that we need to find ways to change the IRB system at the national level so that it ‘does no harm’ either to the ethical conduct of fieldwork or to the quality and range of projects we do.” I can testify certainly to her concerns about attempts by the IRB to tinker with my project. They have expressed concerns and suggested changes regarding both the scope of inquiry and the kind of people that I hoped to make central to the study. For example, I had written in one of my IRB applications that I would purposely have loose exclusion criteria for participating, since there is some evidence in the literature that having strict exclusion criteria in drug and alcohol studies excludes a large number of low-income individuals, African-Americans, and individuals with more severe alcohol, drug and psychiatric problems (Humphreys and Weisner 2000). As an anthropologist particularly interested in those left behind, those least able to negotiate the world in an outwardly cohesive manner and those most “vulnerable” to the vagaries of social injustices, I wanted to include—if not prioritize—their participation. I was prompted to provide more screening materials that showed I would screen out the sicker individuals. Was this out of their concern for the sake of the women involved in my study or for me, I wondered? How can we put ourselves “squarely on the side of the human suffering” (1991: 196) as Nancy Scheper-Hughes wrote in an article decades ago reflecting on the role of critical medical anthropology, if the sickest and the most marginalized are weeded out of our field of inquiry because of IRB concerns?
Another area of active intervention was the suggestion that I “might review the literature on motivational interviewing and incorporate relevant questions into your study design.” For those not familiar with what motivational interviewing, it is a counseling style now popular in clinical medicine that entails an empathic stance and the use of questions that help “motivate” an individual towards some form of behavior change or addressing a person’s ambivalence about changing one’s behavior (in this case, stopping drug use). Motivational interviewing is a strategy used by a clinician or care provider to help a client/patient understand why they might want to stop using and help prepare them for what changes and difficulties that treatment might entail (Miller and Rollnick 2002). While no one should have any illusions that anthropology is a “neutral” or purely observational science, it seemed invasive of the IRB to suggest interventional changes to both the questions in my survey and to my stance in the field.
In writing this post, I am hoping to avoid the “cynicism and disengagement” that Lederman warned might be the result of such overwrought IRB encounters, but I do think it is necessary that we understand that IRBs have a very central role in shaping our experiences of doing research. Many of my colleagues have heard me talk about returning to finish my last year of medical school because I have been so overwhelmed by the magnitude and effort required by the research approval process. As Carol Heimer and JuLeigh Petty have written in a review on bureaucratic ethics and the IRB, “When IRBs do not expressly forbid research, they nevertheless often have a chilling effect early in the process when researchers plan studies that avoid “vulnerable” populations and sensitive topics in order not to run afoul of the IRB, and advise their students and colleagues to do likewise (Bledsoe et al. 2007, Johnson 2008)” (2010: 609).
Furthermore, I think we also must acknowledge the very real possibility that the over-protections of IRBs applied to “populations” here at home—as opposed to expedited or fairly cursory reviews of committees for work proposed abroad—could actually deter medical anthropologists from doing valuable work here at home. I think it is critical that we also be more honest and forthright about how IRBs can actually impede, slow down and alter our research (to be fair, they can potentially offer cross-disciplinary dialogue and helpful suggestions); more of us need to share openly the details of our experiences with IRBs in order to come up with practical techniques for advancing our collective research endeavors. I do think that protections are important, given our dubious record of experimenting on the weaker and less socially well-positioned, and I think that medical anthropologists in particular must grapple with the implications of the increased medicalization of social science research. We should always keep in mind why protections are important, though, and should try to balance protectionism with concerns for distributive or compensatory justice (concerns that often seem to fall away with the intense IRB interest in the rights and risks for individuals).
I also think that we need to work towards de-centralizing the position of dominance that the IRB holds for researchers more generally as well as question the ‘naturalness’ of the university research endeavor. As the role of the university (in fulfilling its mission of conducting research in the goal of public service and benefiting peoples and their environments) becomes critically called into question by public interest groups (I am thinking of the role of Universities Allied for Essential Medicines and their critiques of the university research schemes with regard to patenting neglected and essential medications), we as anthropologists should similarly call into question the value systems and vested interests of those reviewing and approving our research. We need to challenge our IRBs and seek to understand the logic behind their conditions and changes instead of submitting so easily to their requests for revisions. We furthermore need to educate them on the implications and consequences of making social science research into a burden and a deterrent to future studies on topics like incarceration that could greatly benefit from what social science research might be able to offer. If everyone spoke a little truth to power within our own university and regulatory settings, then maybe the IRB would not seem like such a hassle, a nuisance or a stumbling block, as we seek to enact a more relevant and engaged era of anthropology.
Kim Sue is a 6th year student in the Harvard Social Science MD-PhD Program. She is currently working on her PhD in sociocultural/medical anthropology. She lives in Boston, MA.
Advisory Committee on Human Radiation Experiments . 1996 Prisoners: A Captive Research Population. Final Report of the Advisory Committee on Human Radiation Experiments. New York: Oxford University Press; 1996:263-283.
Council for International Organizations of Medical Science (CIOMS). 2002 International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: World Health Organization.
Chenault, Scott. 2012 Getting into the “Belly of the Beast”: A Guide to Gaining Access for Prison Ethnography. ACJS Today.
Heimer, Carol and JuLeigh Petty. 2010 Bureaucratic Ethics: IRBs and the Legal Regulation of Human Subjects Research. Annual Review of Law and Social Science 6(1): 601-626.
Hoffman, Sharona. 2000 Beneficial And Unusual Punishment: An Argument in Support of Prisoner Participation in Clinical Trials. Indiana Law Rev. 2000;33(2):475-515.
Hornblum Allen. 1998 Acres of Skin: Human Experiments at Holmesburg Prison. New York: Routledge.
Humphreys, Keith and Constance Weisner. 2000 Use of Exclusion Criteria in Selecting Research Subjects and Its Effect on the Generalizability of Alcohol Treatment Outcome Studies. American Journal of Psychiatry 157: 588-594.
Gostin, Laurence. 2007 Biomedical Research Involving Prisoners: Ethical Values and Legal Regulation. JAMA 297 (7): 737-740.
Lederman, Rena. 2007 Educate your IRB (a boilerplate experiment). Savage Minds Blog. Available online: http://savageminds.org/2007/04/02/educate-your-irb-a-boilerplate-experiment/
Miller, William and Stephen Rollnick. 2002 Motivational Interviewing: Preparing People for Change, second ed. New York: Guilford Press.
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1976 Report and Recommendations: Research Involving Prisoners. DHEW Publication No. (OS) 76-131. Bethesda, MD.
Rhodes, Lorna. 2001 Towards an Anthropology of Prisons. Annual Review of Anthropology 30: 65-83.
Scheper-Hughes, Nancy. 1991 Three Propositions for a Critically Applied Medical Anthropology. Social Science and Medicine 30 (2): 189-197.
Wacquant, Loic. 2002 The Curious Eclipse of Prison Ethnography in the Age of Mass Incarceration. Ethnography 3: 371-397.
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