Journal article
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
International health, Vol.12(6), pp.560-566
11/01/2020
DOI: 10.1093/inthealth/ihaa072
PMCID: PMC7651191
PMID: 33165556
Abstract
Background: In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa.
Methods: We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation.
Results: Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process.
Conclusions: Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities' socio-economic status and how compensation can be potentially coercive.
Details
- Title: Subtitle
- Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa
- Creators
- Nothando Ngwenya - University College LondonManono Luthuli - Africa Health Research InstituteResign Gunda - University College LondonNtombizonke A. Gumede - Africa Health Research InstituteOluwafemi Adeagbo - University of JohannesburgBusisiwe Nkosi - University College LondonDickman Gareta - Africa Health Research InstituteOlivier Koole - University of LondonMark Siedner - Harvard UniversityEmily B. Wong - University College LondonJanet Seeley - University of LondonVukuzazi Team
- Resource Type
- Journal article
- Publication Details
- International health, Vol.12(6), pp.560-566
- DOI
- 10.1093/inthealth/ihaa072
- PMID
- 33165556
- PMCID
- PMC7651191
- NLM abbreviation
- Int Health
- ISSN
- 1876-3413
- eISSN
- 1876-3405
- Publisher
- Oxford Univ Press
- Number of pages
- 7
- Grant note
- K08AI118538 / National Institute of Allergy and Infectious Disease (NIAID)/National Institutes of Health (NIH); United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Allergy & Infectious Diseases (NIAID) 096527 / Wellcome Trust; European Commission 082384/Z/07/Z / AHRI 096527 / Global Health Bioethics Network R01 AI152149 / National Institute of Allergy and Infectious Diseases; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Allergy & Infectious Diseases (NIAID)
- Language
- English
- Date published
- 11/01/2020
- Academic Unit
- Community and Behavioral Health
- Record Identifier
- 9984274666202771
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