Developing new ways to listen: the value of narrative approaches in empirical (bio)ethics

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics.

Ethical and practical considerations for interventional HIV cure-related research at the end-of-life: A qualitative study with key stakeholders in the United States

Background A unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL. Methods and findings We conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant’s next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement. Conclusions To our knowledge, this empirical ethics study generated the first ethical and practical considerations for interventional HIV cure-related research at the EOL. The ethical complexities of such research must be considered now. We must navigate this ethical conundrum so that we are good stewards of the participants’ extremely altruistic gifts by maximizing the impact and social value of this research. We hope that this study will serve as the foundation for future research and discussion on this topic.

From Mattering to Mattering More: ‘Goods’ and ‘Bads’ in Ageing and Innovation Policy Discourses

This paper provides an empirical ethics analysis of the goods and bads enacted in EU ageing and innovation policy discourses. It revolves around a case study of the persona Maria, developed as part of the EU’s Active and Healthy Ageing Policies. Drawing on Pols’ empirical ethics as a theoretical and methodological approach, we describe the variety of goods (practices/situations to be strived for) and bads (practices/situations to be avoided) that are articulated in Maria’s persona. We analyse how certain ideas about good and bad ageing—those associated with the use of sophisticated technologies—come to matter more in the solutions proposed for Maria and the framing of her unmet needs, while others which were initially seen as relevant and that describe her dreams, fears and interactions, are marginalised. The paper adds to existing studies of ageing and technology by analysing specific practices that render visible how the idea of technology and data sharing as evidently the right path towards futures of (good) ageing, comes to prevail.

Vulnerability, Agency, and the Research Encounter: Family Members' Experiences and Perceptions of Participating in an Observational Clinical Study in Kenya

Pediatric clinical research in low-resourced countries involves individuals defined as “vulnerable” in research ethics guidance. Insights from research participants can strengthen the design and oversight of studies. We share family members' perspectives and experiences of an observational clinical study conducted in one Kenyan hospital as part of an integrated empirical ethics study. Employing qualitative methods, we explored how research encounters featured in family members' care-seeking journeys. Our data reveals that children's vulnerability is intricately interwoven with that of their families, and that research processes and procedures can inadvertently add to hidden burdens for families. In research, the potential for layered and intersecting situational and structural vulnerability should be considered, and participants' agency in constrained research contexts actively recognized and protected.

Palestinian struggle, South Africans and Jewish Israelis

What role does religion play (or not play) in transnational activism in the context of prolonged violence? The narrow strip of land known as Palestine and Israel has special significance to three of the world’s largest faith traditions – Islam, Christianity, and Judaism. The motivations of 21 South African and Jewish Israeli activists in support of the Palestinian struggle offer an inductive, contextual perspective on the interplay between differences in religiosity and shared aims and values in this context. These respondents to a case study in empirical ethics hold tensions of difference and yet navigate between religious and other existential orientations in their praxis of solidarity with the marginalised. The article discusses how and why the activists, despite their different convictions, share similar views of the positive and negative roles played by religion in the Palestinian struggle.

How the logics of the market, bureaucracy, professionalism and care are reconciled in practice: an empirical ethics approach

Background In the Netherlands, the for-profit sector has gained a substantial share of nursing home care within just a few years. The ethical question that arises from the growth of for-profit care is whether the market logic can be reconciled with the provision of healthcare. This question relates to the debate on the Moral Limits of Markets (MLM) and commodification of care. Methods The contribution of this study is twofold. Firstly, we construct a theoretical framework from existing literature; this theoretical framework differentiates four logics: the market, bureaucracy, professionalism, and care. Secondly, we follow an empirical ethics approach; we used three for-profit nursing homes as case studies and conducted qualitative interviews with various stakeholders. Results Four main insights emerge from our empirical study. Firstly, there are many aspects of the care relationship (e.g. care environment, personal relationships, management) and every aspect of the relationship should be considered because the four logics are reconciled differently for each aspect. The environment and conditions of for-profit nursing homes are especially commodified. Secondly, for-profit nursing homes pursue a different professional logic from the traditional, non-profit sector – one which is inspired by the logic of care and which contrasts with bureaucratic logic. However, insofar as professionals in for-profit homes are primarily responsive to residents’ wishes, the market logic also prevails. Thirdly, a multilevel approach is necessary to study the MLM in the care sector since the degree of commodification differs by level. Lastly, it is difficult for the market to engineer social cohesion among the residents of nursing homes. Conclusions The for-profit nursing home sector does embrace the logic of the market but reconciles it with other logics (i.e. logic of care and logic of professionalism). Importantly, for-profit nursing homes have created an environment in which care professionals can provide person-oriented care, thereby reconciling the logic of the market with the logic of care.