Manono Luthuli1, Nothando Ngwenya1,2,3, Dumsani Gumede1, Resign Gunda1,2,3, Dickman Gareta1, Olivier Koole1,4, Mark J. Siedner1,5, Emily B. Wong1,6, Janet Seeley1,3,4
1Africa Health Research Institute, KwaZulu-Natal, South Africa
2Division of Infection and Immunity, University College London, London, UK
3School of Nursing and Public Health, College of Health Sciences, University of KwaZulu-Natal, KwaZulu-Natal, South Africa
4Global Health and Development Department, London School of Hygiene and Tropical Medicine, London, UK
5Division of Infectious Diseases, Massachusetts General Hospital, Boston, USA
6Division of Infectious Diseases, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, USA
Tóm tắt
Limited research has been conducted on explanations and 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 understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa. Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. 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 seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. Participant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected.
