This study explores how qualitative health researchers navigate the demands of medical research ethics committees in Germany where qualitative research is subject to approval only when it is conducted in medical contexts. We present the results of a grounded theory study to investigate qualitative health researchers’ experiences with procedural ethics and the strategies they adopt to navigate its demands. Our analysis revealed six dimensions of experience and three strategies adopted by researchers to navigate the demands of medical research ethics committees. (...) All participants agreed that research ethics is of high importance in qualitative health research, but strategies to navigate the demands of medical research ethics committees ranged from avoiding, and adapting, to transforming the procedures of ethics review. Based on our findings, we provide recommendations for improving the ethics review of qualitative health research. (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)

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)

International research collaborations engage multiple countries, researchers, and universities. This enhances the magnitude of contextual challenges, including legal and ethical dimensions across various jurisdictions, that must be bridged in qualitative research regardless of discipline, also in the construction of informed consents. From a Scandinavian perspective, this discussion paper explores challenges pertaining to the construction of informed consents related to EU data protection legislation, to which research institutions are subject when processing data related to EU residents. Next, it discusses challenges related (...) to different traditions in terms of handling informed consent and research participants’ integrity, including the possibilities to waive anonymity in research. In international, multidisciplinary studies where researchers also operate in relatively ‘unknown territory’, it is especially important to be aware of and reflect on (inter)national possibilities and limitations related to laws, ethics, and culture/traditions in societies and within the academic fields. The variations in laws, ethical guidelines, and traditions in different countries demand that researchers are up to date with laws and ethical guidelines in the studied countries. Their practical implementation in the countries at stake in international, collaborative research endeavours are important, especially since such regulations and guidelines are far from static and change over time. The implementation of good ethical research practice requires democratic, reflexive, and responsive processes in all phases of research. Especially the preparation phase functions as a period to increase and ensure the knowledge and legal/ethical competences of the entire research team to meet the demands in the countries at stake. (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)