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5 Bioethics
KRISTINA ORFALI AND RAYMOND DE VRIES
“In America the purely practical part of science is admirably understood, and careful attention is paid to the theoretical portion which is immediately requisite to application. In this respect, Americans always display a clear, free, original, and inventive spirit: but there is hardly anyone in the United States who devotes himself to the essentially theoretical and abstract portion of human knowledge.”
Alexis de Tocqueville, Why the Americans are more addicted to Practical than to Theoretical Science p. 139 in Democracy in America, Vol. II, 1840
INTRODUCTION
Bioethics emerged in the 1960s as a movement concerned with the moral dimensions of life sciences and healthcare in the US from where it spread all over the world. There are multiple narratives around the birth of bioethics Jonsen (1998), attesting to the difficulties of defining a unified field or a clear object of classical sociological study (unlike, for example, education or religion). Despite its success, few can clearly define the field, often viewed as “in transition, if not confusion” (Faden 2004). Moreover, the sociology of bioethics is still an emerging field of study. That is somewhat surprising given the fact that sociology was defined by Durkheim as the “science of moral facts.” While he did conceive sociology as the science of morality, medicine hardly caught his attention as a “moral fact” – it being a “technique” and an activity which, contrary to morality, “didn’t regulate the ends.”1 Yet suicide caught his attention because, as Michel Foucault (1976) mentions, “[suicide] revealed at the borders and in the interstices of the power over life, the individual and private right to die ….”2 In a way, this echoes the bioethical debates around the right to refuse therapy and around euthanasia, anticipating the prevailing “individualistic” principle of autonomy of contemporary bioethics.
Although bioethics was coming into its own in the late 1960s and early 1970s, sociological analysis of the field – as a distinct area of intellectual inquiry, as a social movement, as a service in clinical and research settings, and as a profession – did not begin until the mid-1980s. This tardiness, which we explore more fully below, is the result of several features of both sociology and bioethics, including sociological unease with matters ethical and bioethical displeasure with sociological descriptions of the field.
When medical sociology was starting to establish itself as a specific field, calling attention to the de-professionalization of medicine, emphasizing a lay perspective on medical knowledge, and fostering a more patient centered approach, it did not include study of the bioethics movement in such transformations. Yet both were advocating almost for the same changes. While today, medical sociology has moved closer to sociology, gaining its independence from medicine, this is not yet the case of the sociology of bioethics. Bioethics started as a challenge to medical authority but was co-opted by medicine (Keirns et al. 2009). We explore the social organization of bioethics as a new area of professional, interdisciplinary expertise, and consider the seeming reluctance of sociologists to address the place of bioethics in medicine.
THE BIRTH OF BIOETHICS IN THE US
1 The emergence of the bioethical enterprise
The principal characteristic of the socio-cultural movement that is American bioethics is the radical transformation of modes of accountability and oversight that took place in the context of medical care and research. These changes were driven, in part, by several infamous scandals, most notably the Tuskegee “experiment” and shifted the source of accountability from medical self/peer regulation to accountability to patients
