changes to promote patients’ rights, medical authority remains strong in the clinical context.
Among many of the factors that played a role in the coming of bioethics, the most salient to the American context is the importance of the law in formally promoting a lay voice in medical matters. Several authors (Annas 2004; Capron 1999) emphasize the crucial and “disproportionate influence” of American law in “shaping the content and methodology of the field.” There is in American society an implicit reliance on courts, a commitment to “due process,” and formal legal equality which translates “into an unwillingness to defer to expert authority” (Capron 1999: 296). California courts have been the most influential in shaping the doctrine of informed consent (Cobbs v. Grant, 502 P. 2d 1 (Cal 1972). Law played a crucial role in end of life issues, in the recognition of advance directives, and the right to refuse treatment. In Wolf’s (2004) terms, law and medical ethics have been constructing as a “co-production” the field of American bioethics. Another feature of bioethics in the US is the public visibility given by the different cases that have shaped issues normally kept into the private world of doctor-patient relationship. Cases such as Florida’s Schiavo case (2005) trigger media uproar and debates, that in turn sharpen thinking, helping define stakes, and allowing for mediation and a practical solution, vitalizing the public bioethical debate (Anspach 2010).
The autonomy paradigm is indeed an ethnocentric product; other cultural references may be more suitable to different healthcare systems, especially if these claim to be more oriented towards the “common good” than individual welfare. Not surprisingly, a stronger focus on vulnerability, dignity (Feuillet-Liger and Orfali 2018), and solidarity developed in the bioethics discourse outside the Anglo-Saxon world, particularly in cultures with socialized healthcare systems.
SOCIOLOGY AND BIOETHICS
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
