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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Flash: Participant understandings of biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa


ELSIcon2022 • Flash • May 27, 2022

Manono Luthuli, Nothando Ngwenya, Dumsani Gumede, Resign Gunda, Dickman Gareta, Olivier Koole, Mark J. Siedner, Emily B. Wong, Janet Seeley

Background: Limited research has been conducted on understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understandings embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural South Africa.
Semi-structured interviews were conducted with participants who were invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. Following transcription and translation, the data was manually coded, and thematically analysed. 
Results: Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation was generally poor among participants, firstly, because of the large volume of information in the consenting process about the Vukuzazi study procedures. Secondly, participants expressed little interest in genetics and biobanking and revealed that their motivation to participate stemmed from the prospect of receiving a free and convenient health screening. 
Conclusion: Participant’s understanding of information provided during the consenting process is affected by the volume of information and the participant’s interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research consider innovative methods to communicate the potential value of consenting for broadly defined future research to improve participant understanding of why their samples are being collected and how they may be used.


Motivation to participate in research
equity and justice in genetics

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