Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.

Sub-Saharan Africa Symbolic legislation biobanking ethical guidelines genomics research stroke

Journal

The theory and practice of legislation
ISSN: 2050-8859
Titre abrégé: Theory Pract Legis
Pays: England
ID NLM: 9918332785906676

Informations de publication

Date de publication:
2021
Historique:
entrez: 24 2 2022
pubmed: 25 2 2022
medline: 25 2 2022
Statut: ppublish

Résumé

Stroke is a major cause of death in Sub-Saharan Africa (SSA) and genetic factors appear to play a part. This led to the development of stroke bio-banking and genomics research in SSA. Existing stroke studies have focused on causes, incidence rates, fatalities and effects. However, scant attention has been paid to the legal issues about stroke bio-banking and genomics research in the sub-region. Therefore, this article examines how genomics research and stroke bio-banking in SSA can be regulated through legislation. The article reports that there are germane issues to be addressed such as appropriate consent model, commercial use of biological samples, ownership right in biological samples and return of research results but that the position of the law on these issues is not satisfactory because there are no statute directly regulating them while existing regulations in these countries are either absent, outdated, conservative or difficult to navigate. The article therefore applies the theory of symbolic legislation and argues for legislative intervention through positive symbolic approach. It recommends that the statute to be enacted should only address policy issues by way of legal rules without being detailed while the understanding of the rules should be fostered in explanatory notes. The explanatory notes should contain examples borne of decided cases, cases settled out of court and the ethical guidelines prepared by Human Heredity and Health in Africa (H3 Africa). Where they are inadequate, recourse may be had to other ethical guidelines subject to the demands of local circumstances.

Identifiants

pubmed: 35198212
doi: 10.1080/20508840.2022.2025741
pmc: PMC8863338
mid: NIHMS1769949
doi:

Types de publication

Journal Article

Langues

eng

Pagination

404-424

Subventions

Organisme : NHGRI NIH HHS
ID : U01 HG010273
Pays : United States

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Auteurs

Muyiwa Adigun (M)

Department of Public Law, Faculty of Law, University of Ibadan, Ibadan, Nigeria.

Babatunde Ojebuyi (B)

Department of Communication and Language Arts, Faculty of Arts, University of Ibadan, Ibadan, Nigeria.

Joshua Akinyemi (J)

Department of Epidemiology and Medical Statistics, College of Medicine, University of Ibadan, Nigeria.

Kolawole Wahab (K)

Neurology Unit, Department of Medicine, University of Ilorin/University of Ilorin Teaching Hospital, Ilorin, Nigeria.

Albert Akpalu (A)

University of Ghana Medical School, CHS, Accra, Ghana.

Fred S Sarfo (FS)

Neurology Unit, Department of Medicine, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.

Lukman F Owolabi (LF)

Neurology Unit, Department of Medicine, Bayero University/Aminu Kano Teaching Hospital, Kano, Nigeria.

Rabiu Musbahu (R)

Neurology Unit, Department of Medicine, Bayero University/Aminu Kano Teaching Hospital, Kano, Nigeria.

Abiodun Bello (A)

Neurology Unit, Department of Medicine, University of Ilorin/University of Ilorin Teaching Hospital, Ilorin, Nigeria.

Reginald Obiako (R)

Neurology Unit, Department of Medicine, Ahmadu Bello University Teaching Hospital, Shika, Zaria, Nigeria.

Mayowa Ogunronbi (M)

Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Nigeria.

Michelle Nichols (M)

College of Nursing, Medical University of South Carolina, Charleston, SC, USA.

Carolyn Jenkins (C)

College of Nursing, Medical University of South Carolina, Charleston, SC, USA.

Ayodele Jegede (A)

Department of Sociology, Faculty of The Social Sciences, University of Ibadan, Ibadan, Nigeria.

Rajesh Kalaria (R)

Neurovascular Research Group, Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, United Kingdom.

Mayowa Owolabi (M)

Department of Medicine, College of Medicine, University of Ibadan, Ibadan, Nigeria.
Centre for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Ibadan, Nigeria.

Bruce Ovbiagele (B)

Department of Neurology, University of California San Francisco, San Francisco, CA, United States.

Oyedunni Arulogun (O)

Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan, Nigeria.

Rufus Akinyemi (R)

Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan, Nigeria.
Department of Medicine, College of Medicine, University of Ibadan, Ibadan, Nigeria.
Centre for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Ibadan, Nigeria.

Classifications MeSH