ZusammenfassungDer vorliegende Beitrag setzt sich mit der Frage nach angemessenen Methodologien und Methoden zur Erhebung und Integration empirischen Wissens in der Bio- und Medizinethik auseinander. Ausgehend von Überlegungen zum Haupt-Gegenstandsbereich der Ethik, dem Menschen als bio-psycho-sozialem Wesen und dessen Moral, wird argumentiert, dass die Sozialwissenschaften die zentralen empirischen Basiswissenschaften der Ethik darstellen. Im zweiten Abschnitt, der sich mit wissenschaftstheoretischen Überlegungen zum Verhältnis von Ethik, Empirie, Methodologien und Theorie und praktischen Beispielen der Integration empirischen Wissens befasst, wird nach den Ursachen für (...) das erkennbare Spannungsverhältnis zwischen Sozialwissenschaften, allgemeiner und angewandter Ethik gefragt, welches sich in der noch zu definierenden empirischen Ethik anders darstellt als in der traditionellen angewandten Ethik. Wie eine Bio-(psycho-soziale) Ethik aussehen könnte, die diese Qualitätskriterien aufnimmt und in ihrem Feld fruchtbar macht, wird abschließend beschrieben. (shrink)

Much has been written in the last decade about how we should understand the value of the sociology of bioethics. Increasingly the value of the sociology of bioethics is interpreted by its advocates directly in terms of its relationship to bioethics. It is claimed that the sociology of bioethics (and related disciplinary approaches) should be seen as an important component of work in bioethics. In this paper we wish to examine whether, and how, the sociology of bioethics can be defended (...) as a valid and justified research activity, in the context of debates about the nature of bioethics. We begin by presenting and arguing for an account of bioethics that does justice to the content of the field, the range of questions that belong within this field, and the justificatory standards (and methodological orientations) that can provide convincing answers to these questions. We then consider the role of sociology in bioethics and show how and under what conditions it can contribute to answering questions within bioethics. In the final section, we return to the sociology of bioethics to show that it can make only a limited contribution to the field. (shrink)

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term “social bioethics.” Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors (...) use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

In many ways, grief is thought to be outside the realm of bioethics and clinical ethics, and grieving patients or family members may be passed off to grief counselors or therapists. Yet grief can play a particularly poignant role in the ethical encounter, especially in cases of brain death, where the line between life and death has been blurred. Although brain death is legally and medically recognized as death in the United States and elsewhere, the concept has been contentious since (...) its inception in 1968. Yet in most cases, families are not allowed to reject the determination of brain death. Apart from religious exemptions, families have no recourse to reject this controversial determination of death. This paper explores the role of grief in brain death determinations and argues that bioethics has failed to address the complexity of grief in determinations of brain death. Grief ought to have epistemological weight in brain death determinations because of the contested nature of the diagnosis and the unique ways in which grief informs the situation. Thus, I argue that, in some rare cases, reasonable accommodation policies should be expanded to allow for refusals of brain death determinations based on the emotional and moral force of grief. By drawing on ethnographic accounts of grief in other cultures, I problematize the current procedural and linear understandings of grief in brain death determinations, and I conclude by offering a new way in which to understand the case of Jahi McMath. (shrink)

Moral theory is an important guide to bioethical decision-making, but it can confuse and mislead those who offer ethical advice to clinicians and researchers, delaying decisions that must be made in a timely fashion. In this paper I examine the ways moral theory can lead bioethicists astray. Absent a sensitivity to the empirical realities of ethical problems, moral theory 1) contributes to the disappearance of the persons caught in an ethical quandary, 2) focuses on the puzzle-solving rather than examining the (...) conditions that generate moral problems, and 3) universalizes ethical dilemmas, overlooking local processes for resolving moral questions. Taken together, empirically informed moral theory and theoretically informed empirical research can help bioethicists transcend the is/ought problem in ethical work. (shrink)

Moral theory is an important guide to bioethical decision-making, but it can confuse and mislead those who offer ethical advice to clinicians and researchers, delaying decisions that must be made in a timely fashion. In this paper I examine the ways moral theory can lead bioethicists astray. Absent a sensitivity to the empirical realities of ethical problems, moral theory 1) contributes to the disappearance of the persons caught in an ethical quandary, 2) focuses on the puzzle-solving rather than examining the (...) conditions that generate moral problems, and 3) universalizes ethical dilemmas, overlooking local processes for resolving moral questions. Taken together, empirically informed moral theory and theoretically informed empirical research can help bioethicists transcend the is/ought problem in ethical work. (shrink)

This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. “Social context” refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...) introduced and exemplified by the presentation of a hypothetical case in which one central issue is limitation of the probability of injury to subjects by selection of individuals who are not expected to live long enough for the known risks of the study to become manifest as harms. Benefits of such considerations may include enhanced subject satisfaction and cooperation, community acceptance, and improved data quality, among other desirable consequences. (shrink)

ZusammenfassungDer vorliegende Beitrag setzt sich mit der Frage nach angemessenen Methodologien und Methoden zur Erhebung und Integration empirischen Wissens in der Bio- und Medizinethik auseinander. Ausgehend von Überlegungen zum Haupt-Gegenstandsbereich der Ethik, dem Menschen als bio-psycho-sozialem Wesen und dessen Moral, wird argumentiert, dass die Sozialwissenschaften die zentralen empirischen Basiswissenschaften der Ethik darstellen. Im zweiten Abschnitt, der sich mit wissenschaftstheoretischen Überlegungen zum Verhältnis von Ethik, Empirie, Methodologien und Theorie und praktischen Beispielen der Integration empirischen Wissens befasst, wird nach den Ursachen für (...) das erkennbare Spannungsverhältnis zwischen Sozialwissenschaften, allgemeiner und angewandter Ethik gefragt, welches sich in der noch zu definierenden empirischen Ethik anders darstellt als in der traditionellen angewandten Ethik. Wie eine Bio- Ethik aussehen könnte, die diese Qualitätskriterien aufnimmt und in ihrem Feld fruchtbar macht, wird abschließend beschrieben. (shrink)