ArticleGlobal bioethics = Problemi di bioetica2020
Informed consent in genomic research and biobanking: taking feedback of findings seriously.
Article in Global bioethics = Problemi di bioetica, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 33 citations in OpenAlex.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Biobank consent preferences and implications for a mixed consent model: biomedical researchers vs. community stakeholders in a semi-urban Yoruba community, Nigeria.Frontiers in genetics · 2026Article
- Article
- "ItResearch ethics · 2025Article
- Research participants and stakeholders' views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana.BMC nephrology · 2025Article
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research.BMC medical ethics · 2024Article
- Can biosampling really be "non-invasive"? An examination of the socially invasive nature of physically non-invasive biosampling in urban and rural Malawi.Global bioethics = Problemi di bioetica · 2024Article
- Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Global bioethics = Problemi di bioetica · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- 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
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- Cultural Values and Beliefs of Selected Local Communities in Botswana: Implications for Human Subject Research Ethics Practice.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.BMC medical ethics · 2021Article
- Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.Global bioethics = Problemi di bioetica · 2021Article
- Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.The theory and practice of legislation · 2021Article
- Community engagement and feedback of results in the H3Africa AWI-Gen project: Experiences from the Navrongo Demographic and Health Surveillance site in Northern Ghana.AAS open research · 2021Article
- Editorial - ethical practice and genomic research.Global bioethics = Problemi di bioetica · 2020Article
- Participant understanding of informed consent in a multidisease community-based health screening and biobank platform in rural South Africa.International health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 5 institutions in 4 countries.
Funding
Abstract
Genomic research and biobanking present several ethical, social and cultural challenges, particularly when conducted in settings with limited scientific research capacity. One of these challenges is determining the model of consent that should support the sharing of human biological samples and data in the context of international collaborative research. In this paper, we report on the views of key research stakeholders in Ghana on what should count as good ethical practice when seeking consent for genomic research and biobanking in Africa. This study was part of a multi-country qualitative case study conducted in three African countries: Ghana, Uganda and Zambia under the auspices of the Human Heredity and Health in Africa initiative (H3Africa). Our study suggests that while participants are willing to give consent for their samples and associated data to be used for future research purposes, they expect to receive feedback about the progress of the research and about the kinds of research being undertaken on their samples and data. These expectations need to be anticipated and discussed during the consent process which should be seen as part of an ongoing communication process throughout the research process.
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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.