Prioritising African perspectives in psychiatric genomics research: Issues of translation and informed consent.

Psychiatric genomics research with African populations comes with a range of practical challenges around translation of psychiatric genomics research concepts, procedures, and nosology. These challenges raise deep ethical issues particularly around legitimacy of informed consent, a core foundation of research ethics. Through a consideration of the constitutive function of language, the paper problematises like-for-like, designative translations which often involve the 'indigenization' of English terms or use of metaphors which misrepresent the risks and benefits of research. This paper argues that effective translation of psychiatric genomics research terminology in African contexts demands substantive engagement with African conceptual schemas and values. In developing attenuated forms of translational thinking, researchers may recognise the deeper motivational reasons behind participation in research, highlighting the possibility that such reasons may depart from the original meaning implied within informed consent forms. These translational issues might be ameliorated with a critical re-examination of how researchers develop and present protocols to institutional ethics review boards.

Investigating assumptions of vulnerability: A case study of the exclusion of psychiatric inpatients as participants in genetic research in low- and middle-income contexts.

Psychiatric genetic research investigates the genetic basis of psychiatric disorders with the aim of more effectively understanding, treating, or, ultimately, preventing such disorders. Given the challenges of recruiting research participants into such studies, the potential for long-term benefits of such research, and seemingly minimal risk, a strong claim could be made that all non-acute psychiatric inpatients, including forensic and involuntary patients, should be included in such research, provided they have capacity to consent. There are tensions, however, regarding the ethics of recruiting psychiatric inpatients into such studies. In this paper our intention is to elucidate the source of these tensions from the perspective of research ethics committee interests and decision-making. We begin by defining inpatient status and outline some of the assumptions surrounding the structures of inpatient care. We then introduce contemporary conceptions of vulnerability, including Florencia Luna's account of vulnerability which we use as a framework for our analysis. While psychiatric inpatients could be subject to consent-related vulnerabilities, we suggest that a particular kind of exploitation-related vulnerability comes to the fore in the context of our case study. Moreover, a subset of these ethical concerns takes on particular weight in the context of genetic research in low- and middle-income countries. At the same time, the automatic exclusion of inpatients from research elicits justice-related vulnerabilities.

"We Hide Under the Scriptures": Conceptualization of Health Among United Methodist Church Clergy in Kenya.

As community leaders, clergy are well-positioned to impact the health of their congregants. Clergy's conceptualizations of health influence their own self-care and how they minister to others. Interviews and focus group discussions on health conceptualizations and health-seeking behaviors were conducted with 49 United Methodist Church clergy in Western Kenya. Data were analyzed using interpretative phenomenological methods. Participants defined health holistically using an environmental health model. Some participants reported not seeking health care so their congregants would believe that their faith kept them healthy. Participants who believed that health comes directly from God reported seeking health care less often. Participants also reported combining traditional indigenous medicine with Western medicine. This study has implications for health promotion among Kenyan clergy and offers the first study of health conceptualization among clergy in Africa.

A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya.

BACKGROUND: International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings. METHODS: We sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. RESULTS: Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. CONCLUSIONS: Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.

COMMENT: "All in this together": the global duty to contribute towards combating the Covid-19 pandemic.

This paper explores the unique realities and effects of Covid-19 as experienced in the global North and global South with special reference to Canada and sub-Saharan Africa; it also examines the moral responsibilities countries have towards their own people and the duty they have to work together to minimise and mitigate the devastating effects of the pandemic worldwide. We illuminate the importance of countries sharing their own world views, strengths, and expertise, and learning from one another in order to better situate all in tackling the pandemic. We argue that it is only insofar as all countries work collaboratively commensurate to each party's capacity to contribute towards the tackling of the Covid-19 pandemic that we may truly be said to be "all in this together". Keywords; Covid-19, global North, global South, solidarity, sub-Saharan Africa, global health