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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 drew considerable attention, revealing from within the clinic the ethical dilemmas of medical work and the secrecy surrounding them. Despite not supporting the complete shift to parental autonomy, the paper did, however, call for the courts’ help to decide in case of disagreement “when death may be chosen, not (now) that generally death cannot be chosen” (p. 893). The question of who should draw the line of what is ethically acceptable became not only an issue between physicians – as it used to be – or even between doctors and parents, but a matter of public debate, a wider social issue.⁴ Life and death decisions also became a flourishing field for sociologists who wished to study how ethical issues were managed within the medical setting.

The law has played an influential role in the shaping of bioethics and in the promotion of “a right to decide rather than in terms of the right thing to do” (Annas 1993; Annas and Miller 1994). The movement of law into American bioethics emphasized the shift from questions of substantive content of right and wrong to the search for practical answers to moral problems. In Evans’ (2002) terms, this was a move from “thick” rationality (debates over ends) to “thin” or formal rationality, focusing more on who should decide and how decisions should be made. The 1976 Quinlan case, the 1990 Cruzan case, and the Patient Self Determination Act (1990) can be viewed as the legal milestones of bioethics, enacting the right to refuse life-sustaining treatments. These precedents created an arsenal of diverse means – from the durable power of attorney to living wills – to ensure that patient’s autonomy as a decision maker could be respected even when the patient herself was no longer competent. The law – developed in the Quinlan case – turned to a “hospital ethics committee” to find a clear and convincing evidence “of what Karen Quinlan would have wanted had she been aware,”⁵ gave bioethics the legitimation it lacked until then. The law validated bioethical expertise (Capron 1999) over medical expertise and triggered the extensive institutionalization of the field, as evidenced by the Joint Commission for Accreditation of Healthcare Organizations (JCAHO) linking hospital accreditation to the requirement of a process for resolving clinical ethics problems.

A jurisprudence of medical dying was taking place, giving bioethicists a greater role, not only in philosophical debates or in research ethics, but within the private world of the clinic. While life and death issues are not the sole topics of bioethics, they are the ones that are most relevant for lay people and the ones (as much as matters around birth or abortion) viewed as the most private issues. Yet these issues are the ones that are matters of public concern. In the US, the law played a role as an instrument of accountability in health care (Morreim 2001) that was unparalleled in other societies.

1 The institutionalization of Bioethics

When the Hastings Center was created in 1969, gathering scholars from different disciplines, including sociologist Renée Fox (Fox et al. 2008), it avoided any affiliation with academic institutions, thus providing an independent forum to discuss and disseminate analysis around bioethical issues such as death, genetic counseling, transplantation, and other topics. The Kennedy Institute, founded in 1971, fostered a more academic path to bioethics. Both organizations stimulated debates and were responsible for prompting federal activities in bioethics.

As mentioned by sociologist Charles Bosk (2007), there are today more than fifty medical schools which have established centers in bioethics in the US. Philosophy is often considered the core discipline of bioethics, although theology was first to appear on the scene (Evans 2014). The most spectacular growth of bioethics is certainly within the healthcare world. From IRB’s to clinical ethics committees, bioethicists have found new employment opportunities. “Strangers at the bedside” (Rothman 1991) became advice givers to clinicians and “moral experts” before any specific qualification beyond theology, philosophy, or humanities was required. The role of an ethics consultant was seen as being the patient advocate, the guardian of her autonomy.