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

Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria
Research Article
Arti Singh, Oyedunni Arulogun, Joshua Akinyemi, Michelle Nichols, Benedict Calys-Tagoe, Babatunde Ojebuyi, Carolyn Jenkins, Reginald Obiako, Albert Akpalu, Fred Sarfo, Kolawole Wahab, Adeniyi Sunday, Lukman F. Owolabi, Muyiwa Adigun, Ibukun Afolami, Olorunyomi Olorunsogbon, Mayowa Ogunronbi, Ezinne Sylvia Melikam, Ruth Laryea, Shadrack Asibey, Wisdom Oguike, Lois Melikam, Abdullateef Sule, Musibau A. Titiloye, Isah Suleiman Yahaya, Abiodun Bello, Rajesh N. Kalaria,Ayodele Jegede,  Mayowa Owolabi, Bruce Ovbiagele, Rufus Akinyemi
PLOS One, 11 August 2022
Open Access
Abstract
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.