BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

BackgroundBesides balancing burdens and benefits of intensive care, ethical conflicts in the process of decision-making should also be recognised. This calls for an ethical analysis relevant to clinicians. The aim was to analyse ethically difficult situations in the process of deciding whether a patient is admitted to intensive care unit.MethodsAnalysis using the ‘Dilemma method’ and ‘wide reflective equilibrium’, on ethnographic data of 45 patient cases and 96 stakeholder interviews in six UK hospitals.Ethical analysisFour moral questions and associated value conflicts were (...) identified. Who should have the right to decide whether a patient needs to be reviewed? Conflicting perspectives on safety/security. Does the benefit to the patient of getting the decision right justify the cost to the patient of a delay in making the decision? Preventing longer-term suffering and understanding patient’s values conflicted with preventing short-term suffering and provision of security. To what extent should the intensivist gain others’ input? Professional independence versus a holistic approach to decision-making. Should the intensivist have an ongoing duty of care to patients not admitted to ICU? Short-term versus longer-term duty to protect patient safety. Safety and security were key values at stake in the ethical conflicts identified. The life-threatening nature of the situation meant that the principle of autonomy was overshadowed by the duty to protect patients from harm. The need to fairly balance obligations to the referred patient and to other patients was also recognised.ConclusionProactive decision-making including advance care planning and escalation of treatment decisions may support the inclusion of patient autonomy. However, our analysis invites binary choices, which may not sufficiently reflect reality. This calls for a complementary relational ethics analysis. (shrink)

Research involving adults who lack capacity to consent relies on proxy (or surrogate) decision making. Proxy decisions about participation are ethically complex, with a disparity between normative accounts and empirical evidence. Concerns about the accuracy of proxies’ decisions arise, in part, from the lack of an ethical framework which takes account of the complex and morally pluralistic world in which proxy decisions are situated. This qualitative study explored the experiences of family members who have acted as a research proxy in (...) order to develop an understanding of the ethical concepts involved, and the interactions between those concepts. Proxies described a complex process of respecting the wishes and preferences of the person they represented, whist integrating preferences with what they viewed as being in the interests of the person. They aimed to make a decision that was ‘best’ for the person and protected them from harm; they also aimed to make the ‘right’ decision, viewed as being authentic to the person’s values and life. Decisions were underpinned by the relationship between the person and their proxy, in which both trust and trustworthiness were key. Proxies’ decisions, based both on respect for the person and the need to protect their interests, arose out of their dual role as both proxy and carer. The findings raise questions about accounts which rely on existing normative assumptions with a focus on accuracy and discrepancy, and which fail to take account of the requirement for proxies to make authentic decisions that arise out of their caring obligations. (shrink)

It is a dominant dictum in ethics that ‘ought implies can’ (OIC): if an agent morally ought to do an action, the agent must be capable of performing that action. Yet, with current technological developments, such as in direct-to-consumer genomics, big data analytics and wearable technologies, there may be reasons to reorient this ethical principle. It is our modest aim in this article to explore how the current wave of allegedly disruptive innovation calls for a renewed interest for this dictum. (...) As an effect of prevention and prediction oriented technological innovation, an increased focus on assumedly controllable lifestyle risks may be anticipated. For lay people who might turn into patients, this may entail a reinforced behavior-based individual responsibilisation. Holding on to the OIC dictum, such responsibilisation seems to require that individuals can actually control what is framed as ‘lifestyle risks’ when there is not always a reliable consensus about what one should do. As such, reference to OIC may be mobilised in function of a political task of designing institutions so as to enable such choice and control. (shrink)

Definition of the problem Medical ethics is increasingly faced with issues that result from power asymmetries and epistemic injustice. However, medical ethics lacks the epistemic lenses for analyzing these social context factors of clinical practice. A theoretical and conceptual reconfiguration is necessary in order to be able to address these issues. Arguments This paper discusses the foundations of critical medical ethics, which takes perspectives and epistemic categories from critical theories. This includes the Critical Theory of the Frankfurt School as well (...) as those approaches from social sciences and cultural studies that reflect on power asymmetries. By drawing on these theories, the epistemic spectrum of medical ethics could be broadened in order to better include real power relations into normative analyses. The paper starts by outlining the contribution of social sciences to empirical medical ethics. This shows that an empirical approach as such cannot bridge the epistemic gap. In a further step, epistemic lenses and concepts from critical theories are discussed, such as Critical Theory of the Frankfurt School, feminist approaches, postcolonial approaches, queer theory, gender studies, and science and technology studies (STS). The conclusion sums up the foundations of critical medical ethics and discusses its limitations. Conclusion Critical medical ethics possesses the epistemic categories and broader social perspective needed to address issues in medicine that result from power asymmetries and epistemic injustice in society. (shrink)

The integration of normative analysis with empirical data often remains unclear despite the availability of many empirical bioethics methodologies. This paper sought bioethics scholars’ experiences and reflections of doing empirical bioethics research to feed these practical insights into the debate on methods. We interviewed twenty-six participants who revealed their process of integrating the normative and the empirical. From the analysis of the data, we first used the themes to identify the methodological content. That is, we show participants’ use of familiar (...) methods explained as “back-and-forth” methods (reflective equilibrium), followed by dialogical methods where collaboration was seen as a better way of doing integration. Thereafter, we highlight methods that were deemed as inherent integration approaches, where the normative and the empirical were intertwined from the start of the research project. Second, we used the themes to express not only how we interpreted what was said but also how things were said. In this, we describe an air of uncertainty and overall vagueness that surrounded the above methods. We conclude that the indeterminacy of integration methods is a double-edged sword. It allows for flexibility but also risks obscuring a lack of understanding of the theoretical-methodological underpinnings of empirical bioethics research methods. (shrink)