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Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

Lookup NU author(s): Professor Raj KalariaORCiD

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

Copyright: © 2022 Singh et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Introduction Genomic research and neurobiobanking are expanding globally. Empirical evidence on the level of awareness and willingness to donate/share biological samples towards the expansion of neurobiobanking in sub-Saharan Africa is lacking. Aims To ascertain the awareness, perspectives and predictors regarding biological sample donation, sharing and informed consent preferences among community members in Ghana and Nigeria. Methods A questionnaire cross-sectional survey was conducted among randomly selected community members from seven communities in Ghana and Nigeria. Results Of the 1015 respondents with mean age 39.3 years (SD 19.5), about a third had heard of blood donation (37.2%, M: 42.4%, F: 32.0%, p = 0.001) and a quarter were aware of blood sample storage for research (24.5%; M: 29.7%, F: 19.4%, p = 0.151). Two out of ten were willing to donate brain after death (18.8%, M: 22.6%, F: 15.0%, p<0.001). Main reasons for unwillingness to donate brain were; to go back to God complete (46.6%) and lack of knowledge related to brain donation (32.7%). Only a third of the participants were aware of informed consent (31.7%; M: 35.9%, F: 27.5%, p<0.001). Predictors of positive attitude towards biobanking and informed consent were being married, tertiary level education, student status, and belonging to select ethnic groups. Conclusion There is a greater need for research attention in the area of brain banking and informed consent. Improved context-sensitive public education on neurobiobanking and informed consent, in line with the sociocultural diversities, is recommended within the African sub region.


Publication metadata

Author(s): Singh A, Arulogun O, Akinyemi J, Nichols M, Calys-Tagoe B, Ojebuyi B, Jenkins C, Obiako R, Akpalu A, Sarfo F, Wahab K, Sunday A, Owolabi LF, Adigun M, Afolami I, Olorunsogbon O, Ogunronbi M, Melikam ES, Laryea R, Asibey S, Oguike W, Melikam L, Sule A, Titiloye MA, Yahaya IS, Bello A, Kalaria RN, Jegede A, Owolabi M, Ovbiagele B, Akinyemi R

Publication type: Article

Publication status: Published

Journal: PLoS ONE

Year: 2022

Volume: 17

Issue: 8

Online publication date: 11/08/2022

Acceptance date: 13/04/2022

Date deposited: 05/03/2024

ISSN (electronic): 1932-6203

Publisher: Public Library of Science

URL: https://doi.org/10.1371/journal.pone.0267705

DOI: 10.1371/journal.pone.0267705

PubMed id: 35951660


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Funding

Funder referenceFunder name
1R01NS114045-01
1R13NS115395-01A1
3U24HG009780 03S5
African Neurobiobank for Precision Stroke Medicine ELSI Project
CaNVAS
ARISES
D43TW01203
H3Africa CVD Supplement
National Institutes of Health
R01NS107900 02S1
SIREN
R01NS107900
R01NS115944 01
U01HG010273
SIBS Gen Gen
SIBS Genomics
Sub-Saharan Africa Conference on Stroke (SSACS)
Training Africans to Lead and Execute Neurological Trials & Studies (TALENTS)
U54HG007479

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