Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model.


Journal

BMC medical ethics
ISSN: 1472-6939
Titre abrégé: BMC Med Ethics
Pays: England
ID NLM: 101088680

Informations de publication

Date de publication:
18 10 2019
Historique:
received: 06 07 2018
accepted: 25 08 2019
entrez: 19 10 2019
pubmed: 19 10 2019
medline: 28 4 2020
Statut: epublish

Résumé

In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.

Identifiants

pubmed: 31623617
doi: 10.1186/s12910-019-0398-2
pii: 10.1186/s12910-019-0398-2
pmc: PMC6798385
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

69

Subventions

Organisme : Wellcome Trust
Pays : United Kingdom

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Auteurs

Paulina Tindana (P)

Department of Health Policy, Planning and Management, School of Public Health, College of Health Sciences, University of Ghana, Legon, Ghana. ptindana@gmail.com.
Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana. ptindana@gmail.com.

Aminu Yakubu (A)

Department of Health Planning, Research & Statistics, Federal Ministry of Health, Abuja, Nigeria.

Ciara Staunton (C)

School of Law, Middlesex University, Hendon, The Burroughs, London, UK.

Alice Matimba (A)

Advanced Courses and Scientific Conferences, Wellcome Genome Campus, Hinxton, UK.

Katherine Littler (K)

Global Policy, Wellcome Trust, London, UK.

Ebony Madden (E)

Division of Genomic Medicine, National Human Genome Research Institute, National Institutes of Health, Rockville, MD, USA.

Nchangwi Syntia Munung (NS)

Department of Medicine, University of Cape Town, Observatory, Cape Town, 7925, South Africa.

Jantina de Vries (J)

Department of Medicine, University of Cape Town, Observatory, Cape Town, 7925, South Africa.

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Classifications MeSH