Undertaking research involving vulnerable groups, such as those requiring resuscitation involves careful analysis during the ethical review process. When a person lacks the capacity to make an informed choice about their participation in a research study, a waiver of consent offers an alternative. This paper is based on a doctoral research study using ethnography to explore the resuscitative practices and experiences of rural nurses through observation and interviews. This paper aims to explore the ethical issues raised by the Human Research (...) Ethics Committee relating to consent of vulnerable patients requiring resuscitation within a rural context. In particular, the challenges of addressing risk (privacy) vs benefit (public) associated with a waiver of consent. This paper will consider why the rural context should be championed during the ethical review process, when decisions about public benefit are being deliberated. Utilising a communitarianism approach that advocates for greater rural representation during the ethical review processes will ensure that rural research involving vulnerable groups can be addressed safely and benefit not only the experiences and practices of rural nurses but also the wider rural communities they serve. (shrink)

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” While some authors dispute and other authors (...) defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors. (shrink)

Little is known about how gendered understandings of patients can inform professionals’ discretionary actions and decisions to include or exclude in clinical practice. Using Connell's poststructuralist perspectives on gender as an analytic framework, this article aims to investigate how professionals’ articulations of depression are framed by signs of masculinity and femininity, and how these articulations inform service provision to patients with depression in clinical psychiatry. Building on interview data drawn from an ethnographic study, the article shows how the professionals’ articulations (...) reflected a gender binary that framed how the feminized patients were often connected to psychiatric care while masculinized patients were referred to separate alcohol or substance use treatment outside the psychiatric institution. The article discusses the societal and institutional conditionality of gendered understandings in psychiatry. In spite of several limitations, the article elucidates how professionals’ understandings might have wide‐ranging implications for the accuracy of epidemiological research and policy, and how they reflect a power struggle between patients and professionals about the legitimate right to interpret patients’ conditions and efforts to manage their illness‐related problems. (shrink)

Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from (...) CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles. (shrink)