ArticleInternational health2020
Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa.
Article in International health, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Acceptability and effectiveness of a study information video in improving the research consent process for youth: a non-inferiority trial.BMJ global health · 2025Trial
- Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.Developing world bioethics · 2026Article
- Conflicting perspectives on what constitutes fair compensation and benefits among research stakeholders in Malawi.BMC medical ethics · 2025Article
- Broad consent in the emergency department: a cross sectional study.Archives of public health = Archives belges de sante publique · 2025Article
- Initiation, cessation and relapse of tobacco smoking over a 3-year period among participants aged ≥15 years in a large longitudinal cohort in rural South Africa.PLOS global public health · 2025Article
- Beyond translations, perspectives for researchers to consider to enhance comprehension during consent processes for health research in sub-saharan Africa: a scoping review.BMC medical ethics · 2023Article
- Community engagement: health research through informing, consultation, involving and empowerment in Ingwavuma community.Frontiers in public health · 2023Article
- 'Labouring' on the frontlines of global health research: mapping challenges experienced by frontline workers in Africa and Asia.Global public health · 2022Article
- Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.Journal of empirical research on human research ethics : JERHRE · 2022Article
- Handling Ethics Dumping and Neo-Colonial Research: From the Laboratory to the Academic Literature.Journal of bioethical inquiry · 2022Article
- An exploration of practices affecting research integrity in global health partnerships.BMJ global health · 2022Article
- Cohort Profile: The Vukuzazi ('Wake Up and Know Yourself' in isiZulu) population science programme.International journal of epidemiology · 2022Article
- Use of a Contained Mycobacterium tuberculosis Mouse Infection Model to Predict Active Disease and Containment in Humans.The Journal of infectious diseases · 2022Article
- Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.BMC medical ethics · 2022Article
- A framework for the promotion of ethical benefit sharing in health research.BMJ global health · 2022Article
- Computer-aided interpretation of chest radiography reveals the spectrum of tuberculosis in rural South Africa.NPJ digital medicine · 2021Article
- Spotlight on global health research.International health · 2020Article
Corrections and comments
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Authors and funding
12 authors.
Funding
Abstract
backgroundIn 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.
methodsWe undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation.
resultsThirty-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.
conclusionsAlthough 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.
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