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.
BackgroundThere 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.MethodsWe 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.ResultsAll 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.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (10.1186/s12910-018-0261-x) contains supplementary material, which is available to authorized users.
Most recent accounts of personal autonomy acknowledge that the social environment a person lives in, and the personal relationships she entertains, have some impact on her autonomy. Two kinds of conceptualizing social conditions are traditionally distinguished in this regard: Causally relational accounts hold that certain relationships and social environments play a causal role for the development and on-going exercise of autonomy. Constitutively relational accounts, by contrast, claim that autonomy is at least partly constituted by a person’s social environment or standing. The central aim of this paper is to raise the question how causally and constitutively relational approaches relate to the fact that we exercise our autonomy over time. I argue that once the temporal scope of autonomy is opened up, we need not only to think differently about the social dimension of autonomy. We also need to reconsider the very distinction between causally and constitutively relational accounts, because it is itself a synchronic (and not a diachronic) distinction.
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