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