In search of epistemic justice. Dialogical reflection of researchers on situated ethics in studies with people living with language and/or cognitive impairment.

BACKGROUND: Academics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience. AIM AND METHODS: This article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60-90 min) organized by the research group consisting of six academic researchers. RESULTS: Ethically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as 'having it wrong,' 'not knowing,' and 'losing something in translation' in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings. DISCUSSION AND CONCLUSION: Approximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty.

The European Commission's Green Deal is an opportunity to rethink harmful practices of research and innovation policy.

The European Union's Green Deal and associated policies, aspiring to long-term environmental sustainability, now require economic activities to 'do no significant harm' to EU environmental objectives. The way the European Commission is enacting the do no significant harm principle relies on quantitative tools that try to identify harm and adjudicate its significance. A reliance on established technical approaches to assessing such questions ignores the high levels of imprecision, ambiguity, and uncertainty-levels often in flux-characterizing the social contexts in which harms emerge. Indeed, harm, and its significance, are relational, not absolute. A better approach would thus be to acknowledge the relational nature of harm and develop broad capabilities to engage and 'stay with' the harm. We use the case of European research and innovation activities to expose the relational nature of harm, and explore an alternative and potentially more productive approach that departs from attempts to unilaterally or uniformly claim to know or adjudicate what is or is not significantly harmful. In closing, we outline three ways research and innovation policy-makers might experiment with reconfiguring scientific and technological systems and practices to better address the significant harms borne by people, other-than-human beings, and ecosystems.

Research Site Anonymity in Context.

This paper utilizes critical theory to interrogate and problematize the practice of anonymising research sites as an ethical imperative. The contributing authors conduct research in and with various communities in southern Africa, position themselves and work from and within diverse areas and specialities of the social sciences. This article is developed from their rich and wide spectrum of field experience with a great diversity of communities, but mainly the poorer, under-resourced, socially and economically marginalized. The authors strongly identify with these communities whose anonymity in published research is seen as marginalizing. Such research sites are places and communities where these researchers grew up and live in, and thus not just as peripheral or 'out there' entities. Therefore, the naming of research sites in this context is deemed as being ethical, out of respect for participants, for a contextually embedded understanding, and for well-targeted interventions and policy influence.

Relational ethics in palliative care research: including a person-centred approach.

The traditional approach to research ethics is to ensure that all ethical issues are adhered to through the scrutiny of research proposals by research ethics committees, themselves sitting within national research governance frameworks. The current approach implies that all potential ethical issues can be considered and mitigated prior to the research. This article is a perspective piece whereby we consider how this approach, on its own, is not enough to ensure ethical practice. We draw attention to the limitations of current ethical procedures in the inherent detachment between the researcher and research participants. We argue that applying a person-centred approach to research ethics allows for contextual and situational factors and places the relationship between research participants and researcher as central.