BackgroundLiterature on issues relating to comprehension during the process of obtaining informed consent (IC) has largely focused on the challenges potential participants can face in understanding the IC documents, and the strategies used to enhance comprehension of those documents. In this review, we set out to describe the factors that have an impact on comprehension and the strategies used to enhance the IC process in sub-Saharan African countries.MethodsFrom November 2021 to January 2022, we conducted a literature search using a PRISMA (...) tool. We searched electronic databases (PubMed, EMBASE, EBSCOHOST) to identify relevant peer reviewed studies. We then reviewed the references of these articles to find additional literature that might have been missed through the initial search. We were particularly interested in full text articles in English that focused on the IC process in SSA published between 2006 and 2020. We included systematic reviews, and studies from Western and Asian countries that included data about SSA. We excluded articles that focused on medical interventions and studies that did not require IC.ResultsOut of the 50 studies included most were multi-country (n = 13) followed by single country studies in South Africa (n = 12); Kenya, Tanzania, Uganda (n = 5) each; Gambia, Ghana and Nigeria (n = 2)each ; and one each for Botswana, Malawi, Mali, Mozambique. We identified three areas of focus: (1) socio-cultural factors affecting IC; (2) gaps in the ethical and legal frameworks guiding the IC process; and (3) strategies used to improve participants’ understanding of IC.ConclusionOur review showed wide recognition that the process of achieving IC in SSA is inherently challenging, and there are limitations in the strategies aimed at improving comprehension in IC. We suggest that there is a need for greater flexibility and negotiation with communities to ensure that the approach to IC is suited to the diverse socio-cultural contexts. We propose moving beyond the literal translations and technical language to understanding IC comprehension from the participants’ perspectives and the researchers’ views, while examining contextual factors that impact the IC process. (shrink)

Bioethics, Volume 36, Issue 5, Page 576-586, June 2022.

Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts of structural and other sources of (...) vulnerability. We discuss some of the core concepts and critiques emerging from the literature on women and children's agency in under‐resourced settings, highlighting calls to move from individualistic to relational models of agency, and to recognise the ambiguous, value‐laden, and heterogeneous nature of the concept. We then draw out what these conceptual shifts might mean for research ethics obligations and guidance, illustrating our analysis using a case vignette based on research ethics work conducted in South Africa. We conclude that if research practices are to be supportive of agency, it will be crucial to scrutinise the moral judgements which underpin accounts of agency, derive more situated definitions of and responses to agency, and enable people and participants to influence these based on their own experiences and self‐perceptions. (shrink)

This article reflects on the conceptual and aesthetic practices engaged in the development of a performance work by Thenjiwe Niki Nkosi and Pamela Phatsimo Sunstrum titled DISRUPTERS, THIS IS DISRUPTER X. Nkosi/Sunstrum liberally describe this multimedia performance work as an ‘anti-opera’. In 2014, the Iwalewahaus African Art Archive at the University of Bayreuth invited Nkosi and Sunstrum to make further developments to an anti-opera they had been conceiving since 2013. The invitation formed part of ‘Mashup The Archive’, (...) an artist residency encouraging contemporary artists from Africa to engage with the Iwalewahaus Archive. The resulting performance was presented at the Schokofabrik, Bayreuth and was a tour through a ‘maquette’ of the anti-opera. It was a ‘living maquette’ in which audiences (termed ‘Safarists’) travelled through stations illustrating sketches of scenes, histories of characters, and other fragments of narrative exposition. The artists illustrated these stations using both ‘relics’ from the Iwalewahaus Archive, and newly generated digital and analogue content. Using a common tactic found in electronic music known as ‘sampling’, Nkosi/Sunstrum recontextualized and reinvented these artefacts to form part of the anti-opera narrative. The world of the anti-opera was created by video projections, sound streamed live to Bayreuth from Johannesburg, handmade replicas of archival objects, original music created from archival instruments, live performers and a professional opera singer. South African literary theorists Delphi Carstens and Mer Roberts suggest that the sci-fi genre ‘offers a potential vehicle for expressing the African oral mythical mode and a (re)writing of the continent’s marginalized oral histories in the mythopoeic mode’.1 Nkosi/Sunstrum are interested in the radical implications of this view and are using sci-fi as a tactic for imagining and ‘occupying’ new African futures. (shrink)

Smartphones with Global Positioning System (GPS) apps offer simple and accurate tools to collect data on human mobility. However, their associated ethical challenges remain to be assessed. We used the Emanuel framework to assess the ethical concerns of using smartphone GPS to record mobility patterns of young adults in rural South Africa for a larger study on mobility and HIV risk (Sesikhona). We conducted four focus groups (FGDs) with individuals eligible for the Sesikhona study. FGD data were coded using the (...) Emanuel framework. Participants perceived use of smartphone GPS to study human mobility and HIV risk as valuable. They raised concerns about invasion of privacy and confidentiality. Also mentioned were risk/benefit ratio, informed consent and ongoing respect. Concerns expressed provided a useful evidence-base for the development of a guide to inform future participants about ethical issues arising in the use of GPS technology to track mobility and health-related issues. (shrink)