Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that offers a (...) lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly sa...

Background Implementing person-centred care (PCC) in nursing homes is challenging due to a gap between theory and practice. Bridging this gap requires suitable education, which focuses on learning how to attune care to the values and preferences of residents and take moral, relational, and situational aspects into account. Staff’s stories about the care they provide (i.e. caring stories) may deliver valuable insights for learning about these aspects. However, there is limited research on using staff's narratives for moral learning. Objective This (...) study aims to provide insight into the perspectives of nursing staff on using their caring stories to learn about PCC. Research design In this qualitative research, we conducted two rounds of interviews with 17 participants working in nursing homes. We wanted to obtain nursing staff’s perceptions of working with their caring stories and the impact on PCC. Ethical considerations Participation was voluntary, and participants provided written consent. The study protocol is approved by The Institutional Review Board of the Medical Ethical Committee Leiden-Den Haag-Delft. Findings Working with caring stories enables nursing staff to provide PCC and improves job satisfaction. It increases awareness of what matters to residents, fosters information rich in context and meaning, and enhances voice and vocabulary. Through in-depth team reflections, nursing staff discussed the significant moments for residents, which centralizes the discussions on the moral quality of care. Discussion Working with caring stories fosters dialogue on PCC and enhances reflection on ethical situations in daily encounters, contributing to the moral development of nursing staff. Putting nursing staff’s narratives at the centre of learning suits their daily practice and intrinsic motivation. Therefore, the outcomes of this study are an addition to the existing literature about using narratives in long-term care. Conclusion Using nursing staff's narratives contributes to PCC and positively impacts nursing staff. We recommend using staff's caring stories as a vehicle for moral learning in the transition to PCC. (shrink)

This article starts with a case outlining ethical challenges encountered in participatory action research (PAR) on vaccine hesitancy in rural India during Covid-19. Community researchers were recruited by a not-for-profit organisation, with the aim of both discovering the reasons for vaccine hesitancy and encouraging take-up. This raised issues about the roles and responsibilities of local researchers in their own communities, where they might be blamed for adverse reactions to vaccination. They and their mentor struggled with balancing societal protection against individual (...) rights to make choices. These themes are explored in two commentaries discussing the difficulties in balancing ethics in public health (prioritising societal benefits), social research (protecting participants from harm and respecting their rights not to be involved) and participatory research practices (maximising democratic participation and decision-making). As discussed in the first commentary, often these cohere, but tensions can arise. The second commentary also raises the issue of epistemic justice, questioning the extent to which the villagers could have a say in the design, implementation and interpretation of the research, and the dangers of not hearing the voices and arguments of people who reject vaccination. The case and commentaries highlight the complexities of PAR and additional challenges in a public health context. (shrink)