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
