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Sociology has been conspicuously absent from the world of bioethics – although, bioethics developed at around the same time as medical sociology was taking root in the American landscape. Very much like medical sociology in the twentieth century (Cockerham 2001) bioethics was concerned with the same topics and was intended to help solve a clinical problem or a policy issue, often being funded by agencies less interested in theoretical work than practical utility. Their parallel development and their mutual unawareness of each other have been little explored. As much as medical sociology moved away from medicine, setting its own research agenda of “defining a medical practice and policy as an object of study” (Cockerham 2001: 4), the sociology of bioethics is slowly becoming a distinctive field of inquiry. In 2005, a Georgetown meeting focusing specifically on the intersection of sociology and bioethics (Fox and Swazey 2008) attracted 30 scholars from North America and England.⁶ In 2006, the very first session entirely devoted to bioethics at the (ISA) International Sociological Association’s World Congress took place in Durban.⁷

Yet, while the field of bioethics is about 50 years old, its emergence and growth have only recently become an object of study for social scientists (Bosk 2007; De Vries et al. 2007). The body of work in the recent sociology of bioethics can be classified into three main strands. The first line of work is a recurrent critique of the bioethical project and is strongly embedded in a contentious relationship which nevertheless has forced bioethics to define more clearly the task of bioethics (Callahan 1999). The second body of work develops in linkage to more classical approaches and topics in medical sociology around ethical dilemmas, information control, medical decision-making, and patient autonomy. The third approach focuses on both the bioethical work in specific new areas generated by the bioethics movement, such as ethics consultation or research ethics, IRB reviews, and on the professionalization of bioethics.

1 The Social Science Critique of bioethics: an uneasy relationship, an uncertain object of study

An uneasy relationship

The relationship between sociology and bioethics has been an uneasy one (Turner 2009). Although sociology had (and has) much to offer to the work of bioethics in the way of theoretical insights and well-tested strategies for data collection, bioethics remained a lonely outpost for a few sociologists until the twenty-first century. Why this lack of interest in bioethics on the part of sociology? For a number of reasons, sociologists have been reluctant to mix themselves up in bioethics. From its beginning, bioethics was seen as a task for philosophers, physicians, and lawyers, not for sociologists. Sociologists and bioethicists have, after all, different approaches to the study of medicine: sociologists attempt to study the medical world as it is while bioethicists write about medicine as it ought to be. Sociology tends to be a descriptive discipline that eschews explicit moral judgments. Conversely, bioethics is a prescriptive discipline, and its basic work is moral evaluation. Bioethics takes social science into the uncertain area of “values” (Sheehan and Michael 2013), a place that social scientists are taught to avoid. Speaking of his graduate school years, Bosk (2008, 228) notes: “In graduate school nothing so much attracted my teachers’ attention, ire, and red pen as any sentence containing the grammatical structure ought, should, or, must plus a verb form. I learned first to give up this grammatical structure, then, like some subject trapped in some elaborately bizarre socio-psycho-linguistic experiment, I stopped thinking in these terms altogether. It was as if I had developed an allergy to normative arguments.” Although sociological work is, of course, rife with values, sociologists have generally steered clear of studying values.

Second, bioethicists are not easy to study. Sociologists find it easier to “study down” rather than to “study up.” Sociologists are quick to study prostitutes, drug users, and “street corner men,” and less likely to study CEOs. Although some high status members of society are flattered by the attention of researchers, bioethicists are counted among those who do not necessarily enjoy the sociological spotlight. Bioethicists welcome the methods of sociology when those methods are used to study already bioethically defined “problems,” but they are less eager to have those methods turned to the analysis of bioethics itself. For example, bioethicists were not pleased when a sociologist pointed out that they are training far too many students: using data collected by the American Society for Bioethics and the Humanities (ASBH), Bosk concluded that in ten years’ time, “close to 2500 bioethicists⁸ will be chasing 600 jobs.” Thinking sociologically about this fact, Bosk (2002: 21–23) notes, “a buyer’s market does not encourage fledgling bioethicists to take positions that go against the grain, to do work that ruffles feathers, or to take positions that challenge the conventional wisdom.” Bioethicists, who view themselves as advocates for patients and research subjects facing the power of medicine and the medical-industrial complex, are made uneasy by this type of sociological analysis. Although we sociologists find this kind of analysis both interesting and useful – after all, effective bioethics must understand how the health system can deflect its goals – critical commentary has not eased the entree of sociologists into the worlds of bioethics.

The sociology of bioethics has thus been mostly a critique of bioethics. Several authors, among them Evans (2002), emphasize how government agencies recruited bioethicists to “translate” the thick reasoning into a formally rational discourse, transforming the “watchdogs,” protecting the public against the scientific elite, into “lapdogs” of the research establishment regarding, for example, human genetic engineering. Others (Stevens 2000) contend that the bioethics movement fostered the illusion of lay ethical oversight but, in fact, served the needs of physicians and biomedical researchers in an area of newly emerging biomedical technologies. Many sociological narratives of the bioethics movement tend to denounce a hidden agenda, a manipulation, a flawed conceptual framework, a blindness to issues of social justice and resource allocation, a cultural myopia. Fox and Swazey (2005, 2008) show the weakness of the bioethical enterprise – a moral enterprise – that, despite its incredible growth, went awry, unable to live up to its initial expectations.

Bioethics as an undefined object of sociological study

As Daniel Callahan (1999), the co-founder of the Hastings Center, expresses it, bioethics, despite its strong institutionalization, has a “lingering uncertainty about its purpose and value.” Like other inter-disciplines, bioethics continues to struggle with the well-known institutional impediments to interdisciplinarity – including problems related to funding, tenure, and promotion – and with the challenge of bringing together different disciplinary “languages,” cultures, and methods of research.

But détente among the disciplines of bioethics also is hampered by peculiar features of the field, including the identity problem of bioethics, an unusual share of discipline-centrism, the “quandary of critical distance”, and varied “moralities of method.” While some of these peculiarities stand in the way of progress in bioethics, others are important sources of bioethical insight. If all players in bioethics “got along”, the generative tensions of the field would be lost.

The identity problem – “Are you fish or fowl?” – exists for all interdisciplinarians, but it is especially acute in bioethics. Unlike other interdisciplines, several scholars in bioethics actively disavow the identity of bioethicist. While some descriptive social scientists proudly call themselves bioethicists; there are many prescriptive bioethicists who eschew the moniker, describing themselves as “philosophers (or theologians, or lawyers) who study bioethical issues.” This identity problem presents a structural challenge to bioethics: if bioethicists cannot agree on who is, and is not, a member of the discipline, it will be nigh unto impossible to secure a distinct place for themselves. An unusual share of discipline centered thinking contributes to this problem of identity. Scholars tend to be reductionist, to see the world through the lenses of the disciplines to which they have devoted their lives. This tendency is aggravated in bioethics where members of different disciplines vie for the last word on what is morally right and wrong.

Another tension among the disciplines of bioethics is found in their varied “moralities of method.” One of the strengths of interdisciplines is their ability to bring many methods of inquiry to bear on a research question, for example, on life and death decisions (Botti et al. 2010). Scholars in science and technology studies use historical research methods, surveys, qualitative methods (including focus groups, in-depth interviews, and ethnographies), and philosophical reflection to explore the emergence, adoption, and consequences of new biotechnologies. Bioethicists also rely on multiple methods, but the nature of their work demands reflection on the moralities embedded in these different methods. We do not refer here to whether the research is done ethically (i.e. no cheating, no harm to subjects), but rather to the moral standpoint assumed by the method. What is the moral vision that drives the sociological imagination? How is that similar to, and different from, the moral vision of the philosophical imagination?

Another hindrance to the peaceful co-existence of the disciplines of bioethics is the quandary of critical distance. Bioethics was born as a critique of harmful research and clinical practices: when bioethicists reflect on their history, they see themselves as speaking truth to (medical) power and advocates of vulnerable patients and research subjects. What happens when the critics are welcomed into the system they criticize? Yes, being admitted to the institutions of medicine and medical research allows one to work for change from the inside out, but it also weakens the critical distance that generated the original wisdom of bioethics. Bioethics gains both power and insight to the extent that there is a conversation between those who work in the system and those who remain outside. Bosk and Frader (1998), in their paper on clinical ethics committees, speculated about sociology’s unexpected lack of interest in studying the social construction of ethical authority. According to these authors (Bosk and Frader 1998: 113) it might be that ethicists’ role is “nothing more than an attempt to preserve professional power by internalizing a critique and thereby disarming it.”

1 A growing, original, but still limited work

While the sociology of bioethics is a recent endeavor, the sociological study of ethical problems in medicine has a long history. Many sociologists have focused on the moral issues of medicine (Bosk 1979; Fox 1959; Fox and Swazey 1974; Gray 1975) well before the emergence of a specific field called bioethics.

The sociology of bioethics can be viewed as a subfield within medical sociology, one that has been ignored by bioethicists preoccupied by the very same topic, namely the often-powerless patient, or more generally, the promotion of a lay voice in medicine. Just as sociologists were seen as “imperialist rivals” to medical professionals (Strong 1979), they have become rivals to bioethicists as the field of bioethics itself grew more and more medicalized (Keirns et al. 2009).

In the 1990s a sociological perspective on bioethics began to develop more clearly with empirical studies of ways in which right and wrong were interpreted and justified and emerged out of the complex social situations of patients, families, and teams in the clinical setting (Clark et al. 1991; Muller 1991). Zussman (1997) examined how medical decision-making in intensive care units was negotiated, while Guillemin and Holmstrom (1986), Anspach (1993), Heimer and Staffen (1998), Orfali and Gordon (2004), Orfali (2004; 2017) looked at similar issues in neonatal intensive care units. From studies of life and death decisions, to descriptions of genetic counselors doing mop up work (Bosk 1992), to analysis of the construction of medical responsibility in geriatrics (Kauffman 1995), sociology began to give accounts of how otherwise hidden values inform medical decision-making. The study of local worlds and individual decision-making processes revealed how the powers and interests at stake influenced the values of a given profession, and indeed, the values of the larger society. The work of Dresser (2001) and Halpern (2001), examining the “morality of risk” in medical experiments, reinforced these findings.

Most sociological studies of bioethics have “deconstructed” the reality of the prevailing model of autonomy offered by bioethics. Studies of informed consent emphasize the way it “manufactures assent” (Anspach 1993, see also Corrigan 2003), turns moral issues into professional and technical ones (Zussman 1997; Hauschildt and DeVries 2019), or uses uncertainty to maintain medical authority (Orfali 2004). While medical ethics, a long-time stronghold of medical authority, has supposedly been challenged, most sociological works suggest that medicine was more or less successful in turning to its own purposes the attempts of others (including medical ethicists) to regulate it.

1 Bioethicists’ work and bioethicists’ expertise

Bioethicists’ work

Another venue of sociological approaches concerns the new areas directly generated by the bioethics movement; for example, the studies of bioethical work in clinical ethics and research ethics committees. An oft-made criticism of bioethicists is that they are full of good ideas and policy suggestions, but that they never stop to consider how these ideas and suggestions actually work. Do end-of-life directives actually succeed in directing end-of-life care? Do ethics consultants steer corporations toward better behavior? Do elaborate rules for controlling conflicts of interest on the part of medical researchers’ work? Do Institutional Review Boards (IRBs) – the American version of research ethics committees – really protect subjects of research? This kind of work, most often conducted by social scientists, allows bioethicists to see if their contributions to the biosciences are making a difference, if bioethics – measured on its own terms – is a success. This is best thought of as the evaluation research wing of bioethics and more recently around the ethical issues related to the Covid-19 pandemic (Orfali 2020).

Clinical Ethics

The hospital context has thus been the privileged location for many studies, although work on clinical ethicists or on the inner work of ethics consultations remains still scarce (Marshall 2001; Hauschildt et al. 2019; Orfali 2018). While some in the field speak pejoratively of bioethics consults as “beeper ethics” – the image here is of a bioethicist who responds to a page and rushes into a patient’s room to render an ethical judgment – the work of clinical ethicists is to help caregivers, patients, and members of patients’ families make decisions in circumstances that are ethically murky.

Social scientists have taken a cynical view of the role played by clinical ethicists, describing them variously as doers of the “dirty work” of medicine (Bosk 1992) and deflectors of criticism of hospitals (Chambliss 1996). For their part, clinical ethicists do not always agree on the value of their services. Their efforts at self-assessment are hampered by the lack of a clear definition of what counts as success in bioethics consultation. Is it level of satisfaction? If so, whose satisfaction? Clients? Families? Caregivers? Judged by this criterion, clinical ethicists seem to have little effect – the 1995 SUPPORT study showed that even well-planned ethics interventions at the end of life did little to improve the satisfaction of any of the participants. Yet, more recent interdisciplinary studies by Schniederman et al. (2003) showed that ethics consultation significantly reduced the use of life-sustaining treatments and was regarded as helpful by a majority of nurses, patients, surrogates, and physicians.

The role of a clinical bioethicist resembles that of a public defender in the American legal system. The formal role of each is to represent the interests of a client in a large and confusing organization, but both must also maintain good relationships with other members of that organization, many of whom are working against their clients. Given this situation, both are inclined to represent the interests of professionals and institutions over those who are merely passing through – patients and families (Feeley 1979). Their work is often associated with messy emotional, relational, or spiritual/religious issues: Bosk (1992), for example, describes genetic counselors as a “mop-up service” – a way for physicians to delegate the awkward task of dealing with distraught parents. Evans (2002), in his study of the role of bioethicists in the public debate over human genetic engineering, analyzed how they claimed jurisdiction over an area once controlled by theologians.

Finally, clinical bioethicists in the US seem to be doing a form of social work or dispute resolution: listening to patients (or staff), suggesting options, finding ways to reconcile individual and institutional agendas. Picking up some of the “dirty work” (Hughes 1958) of medicine might well lead bioethicists to finally become another subordinate profession in the medically-dominated division of labor as shown by these approaches.

Research Ethics

Many studies look at Institutional Review Boards (Keith-Spiegel et al., (2005), examining both the characteristics of IRBs and their decision-making processes (Bosk and De Vries 2008; Stark 2012). After their survey of a stratified sample of IRB administrators, De Vries and Forsberg (2002: 213) concluded:

“A close look at the composition and workload of IRBs shows that not all voices are represented in board deliberations, that the existing structure of IRBs inclines researchers and research institutions to put their interests before the interests of the subjects of research, and that there are too few staff to monitor the many protocols IRBs are required to manage.”

The most popular method of examining IRB decisions has been to watch how several different IRBs respond to the same protocol. In the 1980s these studies were done with “mock” protocols (Goldman and Katz 1982) or with “mock IRBs.” In the 1990s, with the rise of multi-center trials, there was less need to create mock protocols – researchers were gaining first-hand experience with different IRB reactions to the same protocols, and a few of these researchers began to analyze and write about the variations they saw (Silverman et al. 2001; Stair et al., 2001).

Studies of informed consent and recruitment include analysis of the readability of consent forms (Goldstein et al. 1996), in-depth studies of subjects’ understanding of what their consent involved (Corrigan 2003), and surrogate consent for people with dementia to problems with broad consent for the use of blood donations to a biobank (De Vries et al. 2013; Tomlinson et al. 2015). For the most part, researchers interested in questions about conflicts of interest have studied administrative rules and procedures. In 2000, Cho and her colleagues studied policies on faculty conflicts of interest at 89 universities in the US. They discovered wide variation in the management of these conflicts and concluded that this variation “may cause unnecessary confusion among potential industrial partners or competition among universities for corporate sponsorship that could erode academic standards” (Cho et al. 2000: 2203). Ethnographic studies on scientists conducting research with human embryonic stem cells by Wainwright, Williams and their colleagues (2007) are another example of social science’s growing interest in research ethics. Other lines of work include the study of therapeutic misconception (Henderson et al. 2006; Kim et al. 2009) and the experience of research subjects and the professional roles of those involved, as well as key research practices when pharmaceutical drug studies are used as an alternative to standard medical care (Fischer 2009).

The professionalization of bioethical expertise

The question of what moral expertise is and what legitimizes someone to speak as a “bioethicist” remains an ongoing issue within bioethics which has gained increased attention from a sociological perspective (De Vries et al. 2009). While bioethics has been widely institutionalized in the US, bioethicists’ struggle to find a collectively acceptable way of organizing themselves has been more challenging than the creation of an intellectual framework. Despite establishing training programs, occupational associations, graduate programs, and journals all over the country, there has been an ongoing debate about what credentials should be required for those working in hospital ethics committees and institutional review boards that review and approve research involving human subjects. Hospital accreditation in the US requires institutions to have an ethics committee, normally made up of various health and social work professionals, local clergy, community members, and administrators. What qualifies one to participate in ethical decision-making? In the late 1990s the credentials of ethics committee members were debated on the “biomed-l listserv.” The discussion reflected the ambivalence about professionalization among bioethicists at that time. It began with a simple question: do any members of the hospital ethics committee need to be licensed/certified? The responses varied. At one end were those suspicious of licensing; others found licensure to be a useful tool. Still others reflected on the problem of credentialing in bioethics because, given the different backgrounds of participants, there could be no unified basis for judging the competency of any candidate. In the case of this “profession in transition,” the task of separating sheep from goats was complicated by the fact that the best-known bioethicists have not had professional training in bioethics. The founders of bioethics come from a variety of backgrounds, with degrees in philosophy, medicine, theology, and law. When interviewed in 1992 (by Raymond DeVries), many of these “original bioethicists” insisted that the proper way to become a bioethicist was to first get an advanced degree in one of these fields and then to come into bioethics. They justified this position by explaining that bioethics was a rich, interdisciplinary field that drew some of its best insights from the conversation between disciplines. To narrow the focus of training to bioethics would diminish the field.

The need for certification continued to be debated by bioethicists through the first decade of the new century. In 1998, the ASBH adopted and published the report of the Task Force on Standards for Bioethics Consultation, a report that takes a strong stand against certification. The Task Force rejected certification for a number of reasons, including: 1) a fear that certification would increase the risk of displacing providers and patients as the primary moral decision makers, and 2) concern that certification could undermine the disciplinary diversity of bioethics (see American Society for Bioethics and Humanities 1998; Aulisio et al. 2000; Churchill 1999). Around the same time, however, the National Bioethics Advisory Council – in its report Ethical and Policy Issues in Research Involving Human Participants (2001) – recommended that “all investigators, IRB members, and IRB staff should be certified prior to conducting or reviewing research involving human participants.”

As the field grew, and bioethics consultation became more established in medical centers, attitudes about certification began to change, in ways that sociologists of the professions would expect. With no way to separate “real” bioethicists from “pretenders” (Anspach 2010), the demand for an agreed upon professional identity became critical and led many bioethicists to rethink their stance on professional education. As a result, university-based masters and PhD programs in bioethics flourished (Lee and McCarty 2016). The ASBH continued to explore the possibility of certifying ethics consultants, and in 2018, after several task forces considered the question (Horner et al. 2020), the organization moved ahead with the creation of a certification program (https://asbh.org/certification/content-outline).

A survey of the “coming generation” in bioethics (Parnami et al. 2012) found that the bioethicists of the future are finding their way to the profession in a number of different ways and availing themselves of the many new programs created to train those seeking a career in bioethics. Among the reasons given for pursuing bioethics training are personal encounters with the health care system, having an undergraduate course in bioethics, and the desire to add knowledge of bioethics to an existing career. Would-be bioethicists expressed frustration with the plethora of possible pathways to a bioethics career, including masters’ programs, certification, acquiring a PhD in a related field, or obtaining a PhD in bioethics. Members of the coming generation also expressed frustration with the job market for those with graduate level training in bioethics, pointing out the absence of a clear pipeline from educational programs to jobs in bioethics consultation or the regulation of research. The professionalization of bioethics is altering not only the nature of bioethical expertise, but also its authority in American health care, moving the field from its original critical, “prophetic” role, to a more “priestly” role that affirms medical authority (Hauschildt and DeVries 2019).