ArticleJournal of empirical research on human research ethics : JERHRE2019
Negotiating Requests for Reimbursement for Community Engagement: Challenges in Developing an Educational Video for Genomic Biobanking Research in South Africa.
Article in Journal of empirical research on human research ethics : JERHRE, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed.
- Research-Related Stakeholders' Perspectives on Sociocultural Considerations in Biobanking Practice in South Africa.Biopreservation and biobanking · 2023Article
- Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.BMC medical ethics · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Tygerberg Research Ubuntu-Inspired Community Engagement Model: Integrating Community Engagement into Genomic Biobanking.Biopreservation and biobanking · 2019Article
Corrections and comments
- Commented on by
- Commented on by
Authors and funding
4 authors.
Funding
Abstract
Genomic research and the biobanking capacity it requires are experiencing considerable growth on the continent of Africa. However genomic research and biobanking raise a range of legal, ethical, social, and cultural issues, including concerns about broad consent, confidentiality, community stigmatization, discrimination, indefinite storage, and long-term use. There is a need to establish governance frameworks that address these issues, and many international health research ethics and biobanking guidelines now recommend that the best way to do so is by involving potential research participants and key community stakeholders in the research development and the process of acquiring samples and data through active community engagement (CE). This article describes the experience and challenges in developing an educational tool as part of a CE initiative in South Africa and the commentaries reflect on how this process may be improved going forward.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.