Bioethicists have recently expressed concern over a lack of quality control within the field. This apprehension focuses on bioethics expanding in ways that obscure its distinctive ethical remit and the specialist reasoning skills it requires. This thesis about the quality and conduct of bioethics may have particular relevance for clinical ethics. As one of the youngest offshoots of bioethics, the field focuses on the ethical issues that arise specifically in a clinical context. However, non-ethics specialists are increasingly involved in this (...) field. This means that clinical ethics could be especially vulnerable to the quality control concerns articulated within bioethics. The growing public profile of clinical ethics means that concerns over quality in this area warrant specific attention by those concerned with declining standards in bioethics and those working in clinical ethics. (shrink)

In today’s globalized world, nations cannot be totally isolated from or indifferent to their neighbors, especially in regards to medicine and health. While globalization has brought prosperity to millions, disparities among nations and nationals are growing raising once again the question of justice. Similarly, while medicine has developed dramatically over the past few decades, health disparities at the global level are staggering. Seemingly, what our humanity could achieve in matters of scientific development is not justly distributed to benefit everyone. In (...) this paper, it will be argued that a global theoretical agreement on principles of justice may prove unattainable; however, a grass-roots change is warranted to change the current situation. The UNESCO Declaration on Bioethics and Human Rights will be considered as a starting point to achieve this change through extracting the main values embedded in its principles. These values, namely, respecting human dignity and tending to human vulnerability with a hospitable attitude, should then be revived in medical practice. Medical education will be one possible venue to achieve that, especially through role models. Future physicians will then become the fervent advocates for a global and just distribution of health care. (shrink)

The question of whether the universe is expanding or contracting serves as a model for current questions facing the medical humanities. The medical humanities might aptly be described as a metamedical multiverse encompassing many separate universes of discourse, the most prominent of which is probably bioethics. Bioethics, however, is increasingly developing into a new interdisciplinary discipline, and threatens to engulf the other medical humanities, robbing them of their own distinctive contributions to metamedicine. The philosophy of medicine considered as a distinct (...) field of study has suffered as a result. Indeed, consensus on whether the philosophy of medicine even constitutes a legitimate field of study is lacking. This paper presents an argument for the importance of a broad conception of the philosophy of medicine and the central role it should play in organizing and interpreting the various fields of study that make up the metamedical multiverse. (shrink)

This paper explores the relevance of the debate about ethical expertise for the practice of clinical ethics. We present definitions, explain three theories of ethical expertise, and identify arguments that have been brought up to either support the concept of ethical expertise or call it into question. Finally, we discuss four theses: the debate is relevant for the practice of clinical ethics in that it (1) improves and specifies clinical ethicists' perception of their expertise; (2) contributes to improving the perception (...) of moral competence of non-ethicists; (3) gives insight into complementary styles of argumentation of ethicists and non-ethicists; and (4) contributes to the awareness of the problem of profession-building of (clinical) ethicists. (shrink)

This article provides empirical evidence of the social context and moral reasoning embedded within a parents’ decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family’s blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or (...) privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people’s lives and the moral reasoning they negotiate when participating in autism genetic research. (shrink)

This essay offers a Jewish approach to ethnography in religious ethics. Following the work of other ethnographers working in religious ethics, I explore how an ethnographic account of reproductive ethics among Haredi Jewish women in Jerusalem enhances and improves Jewish ethical discourse. I argue that ethnography should become an integral part of Jewish ethics for three reasons. First, with a contextual approach to guidance and application of law and norms, an ethnographic approach to Jewish ethics parallels the way ethical decisions (...) are made on a daily basis in Jewish communities. Second, ethnography bolsters the voices of those involved in ethical discourse. Third, ethnography facilitates the bridge between local ethical questions and global ethical discourse. (shrink)

Modern scholars and bioethicists continue to learn from the Holocaust. Scholarship and history show that the authoritarian Nazi state limited and steered the development and power of professions and professional ethics during the Holocaust. Eliminationist anti-Semitism drove German professions and many professionals to join in policies and programs of mass deportation and ultimately genocidal mass murder, while also excluding many professionals from paid work. For many physicians and other medical professionals, humane and truly ethical practices were limited by constrained professional (...) autonomy and coercive state laws. Education and research in natural sciences were distorted by applications of racist eugenic policies and practices. In law schools and legal professions, professionals were rewarded as judgmental enforcers of state policies, often working with limited independent agency and in the public sphere. Mass harm and mass crimes were therefore perpetrated in accordance with Nazi laws and policies, incorporating professions and professionals into destructive practices, along with other occupational groups. (shrink)

Background: Noninvasive prenatal testing (NIPT) is a new prenatal screening technology that became commercially available in the United States in 2011. NIPT's increased accuracy and low false positive rate compared to previous screening methods enable many women to avoid invasive diagnostic testing and receive much desired reassurance. NIPT has received much attention for both its benefits and drawbacks. Methods: Observation of genetic counseling sessions and qualitative interviews with women offered NIPT at a large academic medical center were conducted. Two ethnographic (...) cases studies derived from the overall data set are used to illustrate the study findings. Results: Many fundamental ethical questions about prenatal screening, such as abortion or the value of disabled children, often do not emerge during clinical sessions, enabling most women to defer thinking about these issues until the future, when and if the need should arise. It may only be in the rare case when a woman receives a positive test result that she may be forced to confront ethical issues that she had up until then been able to avoid. Conclusions: Women want, and are grateful to have, access to NIPT, which offers much desired reassurance. This desire for reassurance may come at the expense of having contemplated the potential negative outcomes and limitations of testing. In the rare circumstance where women do not receive reassuring results, they may be unprepared and shocked by what NIPT can and cannot reveal. The routinization of NIPT as the latest and best available prenatal screening test does not necessarily create new ethical issues, but this study highlights ethical continuities following its arrival. However, the continued expansion of NIPT to include more conditions and women will increase the number of women who receive positive results, including false positives, and who may be shocked and unprepared as a result. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

A truly Christian bioethics challenges the nature, substance, and application of secular morality, dividing Christians from non-Christians, accenting central moral differences, and providing content-full forthrightly Christian guidance for action. Consequently, Christian bioethics must be framed within the metaphysical and theological commitments of Traditional Christianity so as to provide proper orientation toward God. In contrast, secular bioethicists routinely present themselves as providing a universal bioethics acceptable to all reasonable and rational persons. Yet, such secular bioethicists habitually insert their own biases and (...) prejudices into their moral conclusions, ethical consultations, and political aspirations, without any real justification. As this article explores, the ideologically driven anti-Christian commitments, including commitments to human rights and social justice, embodied within contemporary bioethics routinely illustrate the increasing gap between the traditionally Christian and the devoutly secular, further deepening the culture wars. (shrink)

As our knowledge of the functional and pharmacological architecture of the nervous system increases, we are getting better at treating cognitive and affective disorders. Along with the ability to modify cognitive and affective systems in disease, we are also learning how to modify these systems in health. “Cosmetic neurology,” the practice of intervening to improve cognition and affect in healthy individuals, raises several ethical concerns. However, its advent seems inevitable. In this paper I examine this claim of inevitability by reviewing (...) the evolution of another medical practice, cosmetic surgery. Cosmetic surgery also enhances healthy people and, despite many critics, it is practiced widely. Can we expect the same of cosmetic neurology? The claim of inevitability poses a challenge for both physicians and bioethicists. How will physicians reconsider their professional role? Will bioethicists influence the shape of cosmetic neurology? But first, how did cosmetic surgery become common? (shrink)

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019 Nature commentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example. In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field (...) of inquiry and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology. (shrink)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality of values and (...) interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)