Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, some (...) authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices. (shrink)

This paper presents scientists’ understanding of their roles in society and corresponding responsibilities. It discusses the researchers’ perspective against the background of the contemporary literature on scientific responsibility in the social sciences and philosophy and proposes a heuristic that improves the understanding of the complexity of scientific responsibility. The study is based on qualitative interviews with senior scientists. The presented results show what researchers themselves see as their responsibilities, how they assume them, and what challenges they perceive with respect to (...) their responsibilities. Regarding the latter, the interviewed researchers highlight those aspects of responsibility that go beyond the expertise of their professional role, and thus cannot be carried by scientists alone. For example, scientists alone cannot determine the general direction science takes, or the useful application of their research. The interviewed researchers describe those challenges as responsibilities that must be shared across different societal groups. In the theoretical literature, responsibility has been described as a relation between an actor (who), the action for which someone is responsible (what), and the normative framework against which someone is responsible (why). We will draw on this concept of “relational responsibility” to identify the various actors, normative frameworks, and actions relevant to scientific responsibility. This will serve as a heuristic tool to help identify the entanglement of responsibilities spread across several societal groups. (shrink)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy (...) makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

Introduction: The coronavirus disease 2019 pandemic has placed intensive care units (ICU) triage at the center of bioethical discussions. National and international triage guidelines emerged from professional and governmental bodies and have led to controversial discussions about which criteria—e.g. medical prognosis, age, life-expectancy or quality of life—are ethically acceptable. The paper presents the main points of agreement and disagreement in triage protocols and reviews the ethical debate surrounding them. Sources of data: Published articles, news articles, book chapters, ICU triage guidelines (...) set out by professional societies and health authorities. Areas of agreement: Points of agreement in the guidelines that are widely supported by ethical arguments are (i) to avoid using a first come, first served policy or quality-adjusted life-years and (ii) to rely on medical prognosis, maximizing lives saved, justice as fairness and non-discrimination. Areas of controversy: Points of disagreement in existing guidelines and the ethics literature more broadly regard the use of exclusion criteria, the role of life expectancy, the prioritization of healthcare workers and the reassessment of triage decisions. Growing points: Improve outcome predictions, possibly aided by Artificial intelligence (AI); develop participatory approaches to drafting, assessing and revising triaging protocols; learn from experiences with implementation of guidelines with a view to continuously improve decision-making. Areas timely for developing research: Examine the universality vs. context-dependence of triaging principles and criteria; empirically test the appropriateness of triaging guidelines, including impact on vulnerable groups and risk of discrimination; study the potential and challenges of AI for outcome and preference prediction and decision-support. (shrink)