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
