Prioritising African perspectives in psychiatric genomics research: Issues of translation and informed consent. Issue 3 (14th November 2019)

• Record Type: Journal Article
• Authors: Kamaara, Eunice; Kong, Camillia; Campbell, Megan
• Is Part Of: Developing world bioethics. Volume 20:Issue 3(2020)
• Page Start: 139
• Page End: 149
• Publication Date: 2019-11-14
• Subjects: African perspectives -- psychiatric genomics research -- translation -- informed consent; Bioethics -- Developing countries -- Periodicals; Medical ethics -- Developing countries -- Periodicals; 174.2091724
• DOI: 10.1111/dewb.12248
• Languages: English
• ISSNs: 1471-8731

Abstract

Abstract: 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.