TY - JOUR
T1 - Biological sample donation and informed consent for neurobiobanking
T2 - Evidence from a community survey in Ghana and Nigeria
AU - Singh, Arti
AU - Arulogun, Oyedunni
AU - Akinyemi, Joshua
AU - Nichols, Michelle
AU - Calys-Tagoe, Benedict
AU - Ojebuyi, Babatunde
AU - Jenkins, Carolyn
AU - Obiako, Reginald
AU - Akpalu, Albert
AU - Sarfo, Fred
AU - Wahab, Kolawole
AU - Sunday, Adeniyi
AU - Owolabi, Lukman F.
AU - Adigun, Muyiwa
AU - Afolami, Ibukun
AU - Olorunsogbon, Olorunyomi
AU - Ogunronbi, Mayowa
AU - Melikam, Ezinne Sylvia
AU - Laryea, Ruth
AU - Asibey, Shadrack
AU - Oguike, Wisdom
AU - Melikam, Lois
AU - Sule, Abdullateef
AU - Titiloye, Musibau A.
AU - Yahaya, Isah Suleiman
AU - Bello, Abiodun
AU - Kalaria, Rajesh N.
AU - Jegede, Ayodele
AU - Owolabi, Mayowa
AU - Ovbiagele, Bruce
AU - Akinyemi, Rufus
N1 - Publisher Copyright:
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.
PY - 2022/8
Y1 - 2022/8
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85135902848&partnerID=8YFLogxK
U2 - 10.1371/journal.pone.0267705
DO - 10.1371/journal.pone.0267705
M3 - Article
C2 - 35951660
AN - SCOPUS:85135902848
SN - 1932-6203
VL - 17
JO - PLoS ONE
JF - PLoS ONE
IS - 8 March
M1 - e0267705
ER -