Literature DB >> 35198212

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

Muyiwa Adigun1, Babatunde Ojebuyi2, Joshua Akinyemi3, Kolawole Wahab4, Albert Akpalu5, Fred S Sarfo6, Lukman F Owolabi7, Rabiu Musbahu7, Abiodun Bello4, Reginald Obiako8, Mayowa Ogunronbi9, Michelle Nichols10, Carolyn Jenkins10, Ayodele Jegede11, Rajesh Kalaria12, Mayowa Owolabi13,14, Bruce Ovbiagele15, Oyedunni Arulogun16, Rufus Akinyemi9,13,14.   

Abstract

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because there are no statute directly regulating them while existing regulations in these countries are either absent, outdated, conservative or difficult to navigate.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.

Entities:  

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

Year:  2022        PMID: 35198212      PMCID: PMC8863338          DOI: 10.1080/20508840.2022.2025741

Source DB:  PubMed          Journal:  Theory Pract Legis        ISSN: 2050-8840


  25 in total

1.  Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

Authors:  Gloria M Petersen; Brian Van Ness
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

2.  Careful governance of African biobanks.

Authors:  Alan Christoffels; Akin Abayomi
Journal:  Lancet       Date:  2020-01-04       Impact factor: 79.321

3.  Stroke survivors in Nigeria: A door-to-door prevalence survey from the Niger Delta region.

Authors:  Martinsixtus C Ezejimofor; Olalekan A Uthman; Omosivie Maduka; Aloysius C Ezeabasili; Arthur C Onwuchekwa; Benedeth C Ezejimofor; Eme Asuquo; Yen-Fu Chen; Saverio Stranges; Ngianga-Bakwin Kandala
Journal:  J Neurol Sci       Date:  2016-11-25       Impact factor: 3.181

4.  Applicability of the principle of respect for autonomy: the perspective of Turkey.

Authors:  Mahmut Alpertunga Kara
Journal:  J Med Ethics       Date:  2007-11       Impact factor: 2.903

Review 5.  The burden of stroke in Africa: a glance at the present and a glimpse into the future.

Authors:  Mayowa O Owolabi; Sally Akarolo-Anthony; Rufus Akinyemi; Donna Arnett; Mulugeta Gebregziabher; Carolyn Jenkins; Hemant Tiwari; Oyedunni Arulogun; Albert Akpalu; Fred Stephen Sarfo; Reginald Obiako; Lukman Owolabi; Kwamena Sagoe; Sylvia Melikam; Abiodun M Adeoye; Daniel Lackland; Bruce Ovbiagele
Journal:  Cardiovasc J Afr       Date:  2015 Mar-Apr       Impact factor: 1.167

6.  Broad consent for biobanks is best - provided it is also deep.

Authors:  Rasmus Bjerregaard Mikkelsen; Mickey Gjerris; Gunhild Waldemar; Peter Sandøe
Journal:  BMC Med Ethics       Date:  2019-10-15       Impact factor: 2.652

7.  Informed consent in genomic research and biobanking: taking feedback of findings seriously.

Authors:  Paulina Tindana; Cornelius Depuur; Jantina de Vries; Janet Seeley; Michael Parker
Journal:  Glob Bioeth       Date:  2020-02-23

8.  A framework for tiered informed consent for health genomic research in Africa.

Authors:  Victoria Nembaware; Katherine Johnston; Alpha A Diallo; Maritha J Kotze; Alice Matimba; Keymanthri Moodley; Godfrey B Tangwa; Rispah Torrorey-Sawe; Nicki Tiffin
Journal:  Nat Genet       Date:  2019-11       Impact factor: 38.330

Review 9.  Global and regional burden of stroke during 1990-2010: findings from the Global Burden of Disease Study 2010.

Authors:  Valery L Feigin; Mohammad H Forouzanfar; Rita Krishnamurthi; George A Mensah; Myles Connor; Derrick A Bennett; Andrew E Moran; Ralph L Sacco; Laurie Anderson; Thomas Truelsen; Martin O'Donnell; Narayanaswamy Venketasubramanian; Suzanne Barker-Collo; Carlene M M Lawes; Wenzhi Wang; Yukito Shinohara; Emma Witt; Majid Ezzati; Mohsen Naghavi; Christopher Murray
Journal:  Lancet       Date:  2014-01-18       Impact factor: 79.321

10.  Dynamic consent: a patient interface for twenty-first century research networks.

Authors:  Jane Kaye; Edgar A Whitley; David Lund; Michael Morrison; Harriet Teare; Karen Melham
Journal:  Eur J Hum Genet       Date:  2014-05-07       Impact factor: 4.246

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