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.
The Pragmatic Triumph of Autonomy
Autonomy emerged as the most powerful principle in American bioethics (Wolpe 1998), despite the insistence of Beauchamp and Childress (1979), the founders of principlism in bioethics, that equal moral weight should be given to the four core principles (autonomy, beneficence, non-maleficence, and justice). The efficiency of such formal principles, as reflected in Tocqueville’s excerpt in the introduction, maybe more than his entrenched allusion to the American individualism, explains the success of the autonomy paradigm over all other principles in American Bioethics, making autonomy the ideology of bioethics. Wolpe (1998) gives an account of how autonomy became the central and most powerful principle in medical decision making, showing its practical value in decision-making, particularly in a society with no universal health coverage. Autonomy has its detractors. Some lament the overwhelming “mandatory” autonomy imposed upon vulnerable patients (Schneider 1998), while others denounce the triumph of autonomy over all other principles as an “ethnocentric phenomenon” (Fox et al. 2005). It also can be viewed as a way to resolve the apparently insurmountable contradiction between the reign of a universal reason and the resistance of particular cultures. Autonomy is, in a way, the “minimal” principle (Ogien 2018) that can hold together members of a multicultural and pluralistic society by promoting even minimally a stable, “rational” reference.
Bioethics as an American Product
Among the factors leading to the success of the bioethics movement, briefly reviewed above, many are not specific to the American context. After all, the anti- authoritarian movements of the 1960s and the debates around the ends of science were not unique to American culture. In fact, outside the US, matters of research ethics and clinical ethics remain mostly separate; the general landscape is often one of a State-regulated field of research ethics, coexisting with a still silent world of clinical ethics in which medical discretion prevails. The accountability of the researcher and the physician to the human research subject has not so easily expanded to the ordinary patient in other countries. From a sociological perspective, the articulation between research ethics and bedside ethics remains the specific attribute and contribution of the American bioethics movement. In many countries, despite recent legal 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