Evidence map›Paper›PMID 36941048›Full record

ArticleJournal of medical ethics2023

Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities.

Baergen Schultz, Francis E Agamah, Cornelius Ewuoso, Ebony B Madden, Jennifer Troyer, Michelle Skelton, Erisa Mwaka, H3Africa Ethics and Community Engagement Working Group

Abstract read
In one paragraph

Article in Journal of medical ethics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Review
  2. Review
  3. Decolonial health literature can increase our thinking about ethics dumping.Journal of medical ethics and history of medicine · 2023
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Baergen SchultzNational Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA schultzbaergen@gmail.com francisagamahh@gmail.com.
Francis E AgamahComputational Biology Division, Department of Integrative Biomedical Sciences, Institute of Infectious Disease and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa schultzbaergen@gmail.com francisagamahh@gmail.com.ORCID 0000-0002-2980-1392
Cornelius EwuosoMedicine, University of the Witwatersrand, Johannesburg, Gauteng, South Africa.ORCID 0000-0001-7219-5554
Ebony B MaddenTraining, Diversity and Health Equity Office, Office of the Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
Jennifer TroyerNational Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland, USA.
Michelle SkeltonComputational Biology Division, Department of Integrative Biomedical Sciences, Institute of Infectious Disease and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Erisa MwakaCollege of Health Sciences, Makerere University, Kampala, Uganda.
H3Africa Ethics and Community Engagement Working Group

Funding

H3Africa Administrative Coordinating Centre: Enabling and Supporting Genomics and Health Research Capacity Building in AfricaU24HG009780 · NHGRI · UNIVERSITY OF CAPE TOWN · PI SKELTON, MICHELLE · 2017 to 2022
$4.8M
Ethical and social issues in informed consent processes in African genomic researchU01HG009810 · NHGRI · MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES · PI MWAKA, ERISA SABAKAKI · 2017 to 2019
$423k
NHGRI NIH HHS U01 HG009810NHGRI NIH HHS U24 HG009780
6 · The paper itself

Abstract

In July 2020, the H3Africa Ethics and Community Engagement (E&CE) Working Group organised a webinar with ethics committee members and biomedical researchers from various African institutions throughout the Continent to discuss the issue of whether and how biological samples for scientific research may be accessed by commercial entities when broad consents obtained for the samples are silent. 128 people including Research Ethics Committee members (10), H3Africa researchers (46) including members of the E&CE working group, biomedical researchers not associated with H3Africa (27), representatives from the National Institutes of Health (16) and 10 other participants attended the webinar and shared their views. Several major themes emerged during the webinar, with the topics of broad versus explicit informed consent, defining commercial use, legacy samples and benefit sharing prevailing in the discussion. This report describes the consensus concerns and recommendations raised during the meeting and will be informative for future research on ethical considerations for genomic research in the African research context.

Indexed as

GenomicsInformed ConsentEthics Committees, ResearchEthics, ResearchHumansEthicsEthics- ResearchInformed Consent

Identifiers

PMID36941048
PMCPMC10804035

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.