ELSIcon2022 Paper: Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria

ELSIcon2022 • Paper • June 3, 2022

Arti Singh, Michelle Nichols, Oyedunni Arulogun, Olorunyomi Olorunsogbon, Ezinne Uvere, Mayowa Ogunronbi, Joshua Akinyemi, Carolyn Jenkins, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Ayodele Jegede, Mayowa Owolabi, Bruce Ovbiagele, Rufus Akinyemi

Introduction: Genomic research and biobanking including neurobiobanking are expanding globally. Empirical evidence on the level of awareness and willingness to donate/share biological samples towards the expansion of biobanking 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 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), close to 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<0.001). Close to 2 out of 10 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 having being married, having tertiary level education, being a student, 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 public education on biobanking and informed consent, in line with the cultural and religious diversities, is recommended within the African sub region.