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