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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 and lay people (Rothman 1991). Strikingly, this evolution was mostly an American phenomenon. While the ethical regulation of research (Belmont Report 1979) spread across the globe, bioethics outside of the US did not generate a drastic transformation within the care setting. In its early incarnation, American bioethics exposed the paternalistic context of healthcare, unveiling a world of secrets, taboos, power relationships, and benevolent lies, characteristics of medical practice examined earlier by medical sociologists.3
Several inter-related factors contributed to the emergence of the bioethics movement in the US: the role of “moral entrepreneurs,” the context of the anti-authoritarian movements in the 1960s, the impact of new medical technologies that created unprecedented ethical dilemmas in transplantation, end of life, and assisted reproduction, the transformation of medicine with the increasing erosion of trust, the lack of universal healthcare and the influence of the legal system. In addition, the changing character of illness, with the shift from acute to chronic illnesses, altered expectations within the healthcare system, creating a demand for more symmetrical partnerships between patients and physicians (Bury 1982; Charmaz 1991; Strauss and Glaser 1975; Strauss et al. 1985) and increasing the presence of a more powerful lay voice in medicine. Medical sociological literature emphasized patient experiences and narratives long before narrative ethics (Charon and Montello 2002) came into being. Bioethics translated this work into a call for the patient’s ultimate authority through recognition of her absolute autonomy to make decisions regarding her health.
Scientific innovations and technological advances have made possible situations no one could foresee, leading to novel and often agonizing ethical dilemmas. Rothman (1991) argued that bioethics was established to find a way to live with new technology, and to find answers to questions that were unimaginable a few decades ago: When is someone “dead enough” to allow the harvesting of organs? What conditions justify creating a human clone? In 1973, Duff and Campbell’s article on withdrawal of life support for severely compromised neonates and a plea for increased parental involvement