“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

The American Journal of Bioethics, Volume 12, Issue 9, Page 57-59, September 2012.

In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately productive relationship (...) with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

In recent years, much attention has been paid to how older people living at home can remain independent and manage their illness themselves, while less attention has been given to those who have become frail and need assistance with challenges of everyday life. In this article, I drew on Latimer's formulation of care for frail older people as relational and world‐making and on Foucault's work related to the care of the self in developing an understanding of how frail older persons (...) manage to live well at home in the final years of their lives. I use data from an ethnographic study of home care nursing in the homes of 15 frail older people to develop an understanding of how their care at home can be developed. The participants were holding on to life, which reflected their vitality and vulnerability as well as agency in continuing to explore ways to preserve and build their world at home. With declining ability and stamina relations with material things, relatives and official care workers become of central importance in holding on to life. Home care services can be thought of as part of life, as world‐forming, where workers contribute to daily activities that support living well at home. (shrink)

Medical humanities purchases its presence on the medical side of university campuses by adopting as its own the ends of medicine and medical ethics. It even justifies its presence by asserting promotion of those ends as an ethical imperative, most of all to improve the caring in medical care. As unobjectionable, even praiseworthy, as this imperative appears, it actually constrains the possibilities for interpersonal relationship in the context of medical practice. Development of those possibilities requires openness of self to the (...) existentially challenging ethical imperative to care also literally for nothing at all. (shrink)

BackgroundUndocumented migrants experience multiple institutional and legal barriers when trying to access healthcare services. Due to such limitations, healthcare workers often experience ethical dilemmas when caring for undocumented migrants. This article aims to understand how individual healthcare workers who regularly take care of undocumented migrants deal with these dilemmas in practice. So far, the role of healthcare workers in this context has mainly been theorized through the lens of biopolitics, conceiving of healthcare workers as merely obedient instruments of humanitarian government (...) or gatekeeping.MethodsBased on semi-structured, in-depth interviews and ethnographic observations with healthcare workers in Belgium, we explore how they ascribe meaning, reflect upon and give shape to care practices in relation to undocumented migrants. We use Foucault’s later work on care of the self to interpret the accounts given by the healthcare workers.ResultsHealthcare workers in clinical roles exercise a certain degree of freedom in relation to the existing limitations to healthcare access of undocumented migrants. They developed techniques such as purposefully being inattentive to the undocumented status of the migrants. They also try to master their affective responses and transform their bodily attitude towards undocumented patients. They perform practical mental exercises to remind themselves of their role or position in the wider healthcare system and about their commitment to treat all patients equally. These techniques and exercises are inspired by colleagues who function as role models, inspiring them to relate in an ethical way to limitations in healthcare access. The developed care practices sometimes reproduce, sometimes transform the legal and institutional limitations to care for undocumented migrants.ConclusionsThe findings nuance the biopolitical analysis regarding the role of healthcare workers in healthcare delivery to undocumented migrants that has been dominant so far. Theoretically this article provides a reconceptualization of healthcare ethics as care of the self, an ethical practice that is somewhat independent of the traditional professional ethics.Trial Registration Medical ethics committee UZ Jette, Brussels, Belgium – Registration date: 18/05/2016 – Registration number: B.U.N. 143201628279. (shrink)

Stuart Murray's 'Care and the self: biotechnology, reproduction, and the good life' utilizes Foucault's "care of the self" to examine health domains in its title. The present author discusses three important articulations of concern with the Foucauldian concepts of care of the self that are absent in the work of Murray and others: first, the voluntarism and individualism inherent in ideas about care of the self; second, the absence of the interactional and relational; and, third, the perpetuation of the interpretation (...) of Foucault's concept of governmentality, 'the conduct of conduct', as primarily coercive. (shrink)

This paper explores a novel philosophy of ethical care in the face of burgeoning biomedical technologies. I respond to a serious challenge facing traditional bioethics with its roots in analytic philosophy. The hallmarks of these traditional approaches are reason and autonomy, founded on a belief in the liberal humanist subject. In recent years, however, there have been mounting challenges to this view of human subjectivity, emerging from poststructuralist critiques, such as Michel Foucault's, but increasingly also as a result of advances (...) in biotechnology itself. In the face of these developments, I argue that the theoretical relevance and practical application of mainstream bioethics is increasingly under strain. Traditionalists will undoubtedly resist. Together, professional philosopher-bioethicists, public health policymakers, and the global commercial healthcare industry tend to respond conservatively by shoring up the liberal humanist subject as the foundation for medical ethics and consumer decision-making, appealing to the familiar tropes of reason, autonomy, and freedom. (shrink)

Although many studies have previously examined medicalisation, we add a new dimension to the concept as we explore how contemporary oncological medicine shapes the dying self as predominantly medical. Through an analysis of multiple case studies collected within a comprehensive cancer centre in Ontario, Canada, we examine how people with late‐stage cancer and their healthcare providers enacted the process of medicalisation through engaging in the search for oncological treatments, such as experimental drug trials, despite the incurability of their disease. The (...) seven cases included 20 interviews with patients, family, physicians and nurses, the analysis of 30 documents and 5 hr of field observation. A poststructural perspective informed our study. We propose that searching for life extension enacts medicalisation by shaping the dying person afflicted with terminal cancer into new medical subjectivities that are knowledgeable, active, entrepreneurial and curative. Participants initially took up medical thinking from the formal oncology system, but then began to apply and internalise medical rationalities to alter their personhood, thereby generating new curative possibilities for themselves. For people seeking life extension, the embodied and day‐to‐day experiences of suffering and being close to death became expressed and moderated in fundamentally medicalised terms. (shrink)

In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately productive relationship (...) with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

One of the challenges of modern healthcare ethics practice is the navigation of boundaries. Practicing healthcare ethicists in the performance of their role must navigate meanings, choices, decisions and actions embedded in complex cultural and social relationships amongst diverse individuals. In light of the evolving state of modern healthcare ethics practice and the recent move toward professionalization via certification, understanding boundary navigation in healthcare ethics practice is critical. Because healthcare ethics is endowed with many boundaries which often delineate concerns about (...) professional expertise and authority, epistemological reflection on the relationship between theory and practice points toward the social context as relevant to the conceptualization of boundaries. The skills of social scientists may prove helpful to provide data and insights into the conceptualization and navigation of clinical ethics qua profession. Empirical ethics research, which combines empirical description (usually social scientific) with normative-ethical analysis and reflection, is a way forward as we engage and reflect upon issues which have implications for practice standards and professionalization of the role. This requires cooperative engagement of the descriptive and normative disciplines to explore our understandings of boundaries in healthcare ethics practice. This will contribute to the ongoing reflection not only as we envision the professional role but to ensure that it is enacted in practice. (shrink)