Voluntary medical male circumcision (VMMC) provides significant reductions in the risk of female-to-male HIV transmission. Since 2007, VMMC has been a key component of the United States President’s Emergency Plan for AIDS Relief’s (PEPFAR) strategy to mitigate the HIV epidemic in countries with high HIV prevalence and low circumcision rates. To ensure intended effects, PEPFAR sets ambitious annual circumcision targets and provides funding to implementation partners to deliver local VMMC services. In Kenya to date, 1.9 million males have been circumcised; in 2017, 60% of circumcisions were among 10-14-year-olds. We conducted a qualitative field study to learn more about VMMC program implementation in Kenya.
The discipline of bioethics emerged in the United States in the 1960s as a response to several prominent controversies in medical research and practice, including the aftermath of the Tuskegee syphilis experiments and the development of kidney dialysis and associated concerns about resource allocation. Anthropology and bioethics have had a contentious relationship since the field’s inception. Anthropologists have viewed bioethics as ethnocentric, universalizing, and inattentive to the social, cultural, and political contexts of bioethical dilemmas. Anthropologists have challenged foundational bioethical concepts such as autonomy, showing that decision making, in many cases, unfolds in a relational context that is poorly matched to individualized models of informed consent, which lodge decisional authority within a single autonomous patient or research subject. At the same time, anthropology has much to offer the discipline of bioethics. Empirical data can help to address or resolve normative questions, bring unrecognized factors to light, and open up new avenues for further exploration. Anthropology’s characteristic use of cases grounds bioethical debates in contextual details that may change the stakes of discussion. And anthropology can enrich bioethics scholarship with its use of ethnography and social theory to illuminate power structures and relations of inequality, its characteristic dual focus on the micro and the macro, and its capacity for reflexivity. In exchange, bioethics may beckon anthropologists to go outside their comfort zone and develop prescriptive solutions to ethical challenges. On the other hand, debate is ongoing about whether anthropologists should revitalize bioethics and infuse it with more attention to cultural and historical contexts, or, instead, leave bioethics behind entirely and develop their own ethical projects. Moving forward, it may be useful to distinguish between anthropology in bioethics and anthropology of bioethics. The former category of research and scholarship encompasses anthropological studies of bioethically relevant topics, such as end-of-life decision making, organ transplantation, genetic screening, stem cell research, and the globalization of clinical trials. Anthropology of bioethics performs a critical analysis of bioethics as a sphere of knowledge production and professional expertise. This approach acknowledges that bioethics, as an ideology and a practice, may best serve certain kinds of social actors and obscure its limits for other actors and conditions. While these two approaches are by no means mutually exclusive, they can help to structure an understanding of anthropology’s potential contributions to the field.
Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and as “bad,” when they are not, can take an unnecessary toll on trainees’ emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum.
The field of bioethics has had a long preoccupation with payment for research participation. The end result of these debates has largely been consensus that there is nothing ethically wrong with paying people to participate in research and yet it does not feel quite right either. This discomfort is particularly striking when it comes to paying healthy individuals to enroll in Phase I clinical trials that test the safety and tolerability of investigational drugs because these studies can pay substantial sums of money (at least compared to other research) and because there are so-called professional guinea pigs who treat these clinical trials as a job. The two articles published in this issue of AJOB shed light on these topics, with Millum and Garnett (2019 Millum, J., and M. Garnett. 2019. How payment for research participation can be coercive. The American Journal of Bioethics 19(9): 21–31.) focusing on the problem of how compensation can raise important ethical concerns that are separate from the consent process itself and Malmqvist (2019 Malmqvist, E. 2019. “Paid to endure”: Paid research participation, passivity, and the goods of work. The American Journal of Bioethics 19(9): 11–20.) interrogating the nature of work to query whether healthy volunteers should be considered workers. These articles offer much to debates about payment for research participation, but they also both miss an important ethical concern that emerges when financial compensation is offered in contexts of profound social and economic inequality.
Within the field of bioethics and among many clinical trialists, the term “professional” has come to have a very specific meaning when referring to research participants. As highlighted by Roberto Abadie’s book The Professional Guinea Pig,2 the focus is largely on those participants, particularly healthy volunteers, who enroll in clinical trials as though it were their full-time job. In contrast, the excellent article by Zvonareva et al.3 illustrates that the term “professional” can be interpreted in multiple ways that differentially attend to who enrolls in clinical trials and how they perceive their role as research participants. Drawing upon the sociology of professions,4,5 Zvonareva et al. are particularly interested in the specialized knowledge and skills that healthy volunteers acquire through their clinical trial involvement, making them highly reliable—and thus valuable—participants. By learning what is expected of participants during Phase I clinical trials, healthy volunteers can dramatically support the workflow of trialists who must adhere to highly rigid procedure schedules, such as timed dosing of investigational drugs and blood collection. Zvonareva et al. demonstrate that when healthy volunteers adopt a positive work ethic toward their contribution to clinical trials, they engage in a type of identity work6 that allows them to see value in the contribution they are making to science beyond the financial compensation they receive. However, Zvonareva et al. also note that healthy volunteers are not formally credentialed or certified, so unlike traditional professions, they have limited power and no prestige conferred by their professionalizing activities.
Governments often aim to improve children’s wellbeing by targeting the decision-making of their parents. In this paper, I explore this phenomenon, providing an ethical evaluation of the ways in which governments target parental decision-making in the context of anti-poverty policies. I first introduce and motivate the concept of parent-targeted paternalism to categorize such policies. I then investigate whether parent-targeted paternalism is ever pro tanto wrong, arguing that it is when directed at parents who meet a threshold of parental competency. I next explore the factors that affect the degree of pro tanto wrongness of paternalistic anti-poverty policies targeting parents, and provide an account of the conditions under which such policies are on balance permissible, and when they are not. Finally, I illustrate the plausibility and usefulness of my framework by considering a case.
In priority sub-Saharan African countries, on the ground observations suggest that the success of voluntary medical male circumcision (VMMC) programs should not be based solely on numbers of males circumcised. We identify gaps in the consent process and poor psychosocial outcomes among a key target group: male adolescents. We assessed compliance with consent and assent requirements for VMMC in western Kenya among males aged 15–19 (N = 1939). We also examined differences in quality of life, depression, and anticipated HIV stigma between uncircumcised and circumcised adolescents. A substantial proportion reported receiving VMMC services as minors without parent/guardian consent. In addition, uncircumcised males were significantly more likely than their circumcised peers to have poor quality of life and symptoms of depression. Careful monitoring of male adolescents’ well-being is needed in large-scale VMMC programs. There is also urgent need for research to identify effective strategies to address gaps in the delivery of VMMC services.
While risk of harm is an important focus for whether clinical research on humans can and should proceed, there is uncertainty about what constitutes harm to a trial participant. In Phase I trials on healthy volunteers, the purpose of the research is to document and measure safety concerns associated with investigational drugs, and participants are financially compensated for their enrollment in these studies. In this article, we investigate how characterizations of harm are narrated by healthy volunteers in the context of the adverse events (AEs) they experience during clinical trials. Drawing upon qualitative research, we find that participants largely minimize, deny, or re-attribute the cause of these AEs. We illustrate how participants’ interpretations of AEs may be shaped both by the clinical trial environment and their economic motivation to participate. While these narratives are emblematic of the larger ambiguity surrounding harm in the context of clinical trial participation, we argue that these interpretations also problematically maintain the narrative of the safety of clinical trials, the ethics of testing investigational drugs on healthy people, and the rigor of data collected in the specter of such ambiguity.
The federal system for allocating donated livers in the United States is often criticized for allowing geographic disparities in access to livers. Critics argue that such disparities are unfair on the grounds that where one lives is morally arbitrary and so should not influence one’s access to donated livers. They argue instead that livers should be allocated in accordance with the equal opportunity principle, according to which US residents who are equally sick should have the same opportunity to receive a liver, regardless of where they live. In this paper, we examine a central premise of the argument for the equal opportunity principle, namely, that geographic location is a morally arbitrary basis for allocating livers. We raise some serious doubts regarding the truth of this premise, arguing that under certain conditions, factors closely associated with geographic location are relevant to the allocation of livers, and so that candidates’ geographic location is sometimes a morally non-arbitrary basis for allocating livers. Geographic location is morally non-arbitrary, we suggest, since by taking it into account, the UNOS may better fulfill its central goals of facilitating the effective and efficient placement of organs for transplantation and increasing organ donation.