PLOS ONE
RESEARCH ARTICLE
Biological sample donation and informed
consent for neurobiobanking: Evidence from
a community survey in Ghana and Nigeria
Arti Singh 1ID , Oyedunni Arulogun
2, Joshua Akinyemi3, Michelle Nichols 4ID ,
Benedict Calys-Tagoe5, Babatunde Ojebuyi 6ID , Carolyn Jenkins
4, Reginald Obiako7,
Albert Akpalu5, Fred Sarfo8, Kolawole Wahab9, Adeniyi Sunday9, Lukman F. Owolabi10,
Muyiwa Adigun11, Ibukun Afolami12, Olorunyomi Olorunsogbon13, Mayowa Ogunronbi13,
Ezinne Sylvia Melikam14, Ruth Laryea5, Shadrack Asibey8, Wisdom Oguike7,
Lois Melikam7, Abdullateef Sule7, Musibau A. Titiloye2, Isah Suleiman Yahaya 10ID ,
Abiodun Bello9, Rajesh N. Kalaria15, Ayodele Jegede16, Mayowa Owolabi14,
Bruce Ovbiagele17, Rufus Akinyemi13*
a1111111111
a1111111111 1 School of Public Health, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana,
a1111111111 2 Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Ibadan,
a1111111111 Nigeria, 3 Department of Epidemiology and Medical Statistics, College of Medicine, University of Ibadan, Ibadan,
Nigeria, 4 College of Nursing, Medical University of South Carolina, Carolina, Charleston, United Sates of
a1111111111
America, 5 University of Ghana Medical School, College of Health Sciences, Accra, Ghana, 6 Department of
Communication and Language Arts, Faculty of Arts, University of Ibadan, Nigeria, 7 Neurology Unit, Department
of Medicine, Ahmadu Bello University Teaching Hospital, Shika, Zaria, Nigeria, 8 Neurology Unit, Department of
Medicine, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana, 9 Neurology Unit,
Department of Medicine, University of Ilorin Teaching Hospital, University of Ilorin, Ilorin, Nigeria, 10 Neurology
OPEN ACCESS Unit, Department of Medicine, Aminu Kano Teaching Hospital, Bayero University, Kano, Nigeria, 11 Faculty of
Law, University of Ibadan, Ibadan, Nigeria, 12 Faculty of Public Health, College of Medicine, University of
Citation: Singh A, Arulogun O, Akinyemi J, Nichols Ibadan, Ibadan, Nigeria, 13 Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research
M, Calys-Tagoe B, Ojebuyi B, et al. (2022) and Training, College of Medicine, University of Ibadan, Ibadan, Nigeria, 14 Department of Medicine, College of
Biological sample donation and informed consent Medicine, University of Ibadan, Ibadan, Nigeria, 15 Neurovascular Research Group, Institute of Neuroscience,
for neurobiobanking: Evidence from a community Newcastle University, Newcastle upon Tyne, United Kingdom, 16 Department of Sociology, Faculty of the Social
survey in Ghana and Nigeria. PLoS ONE 17(8): Sciences, University of Ibadan, Ibadan, Nigeria, 17 School of Medicine, University of California, San Francisco,
San Francisco, California, United States of America
e0267705. https://doi.org/10.1371/journal.
pone.0267705
* artisingh_uk@yahoo.com
Editor: Helena Kuivaniemi, Stellenbosch University
Faculty of Medicine and Health Sciences, SOUTH
AFRICA Abstract
Received: August 7, 2021
Introduction
Accepted: April 13, 2022
Genomic research and neurobiobanking are expanding globally. Empirical evidence on the
Published: August 11, 2022
level of awareness and willingness to donate/share biological samples towards the expan-
Peer Review History: PLOS recognizes the
sion of neurobiobanking in sub-Saharan Africa is lacking.
benefits of transparency in the peer review
process; therefore, we enable the publication of
all of the content of peer review and author Aims
responses alongside final, published articles. The
To ascertain the awareness, perspectives and predictors regarding biological sample dona-
editorial history of this article is available here:
https://doi.org/10.1371/journal.pone.0267705 tion, sharing and informed consent preferences among community members in Ghana and
Nigeria.
Copyright: © 2022 Singh et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which Methods
permits unrestricted use, distribution, and
reproduction in any medium, provided the original A questionnaire cross-sectional survey was conducted among randomly selected commu-
author and source are credited. nity members from seven communities in Ghana and Nigeria.
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 1 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Data Availability Statement: All relevant data are Results
within the paper and its Supporting Information
files. 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
Funding: Our work is supported by The National
Institutes of Health grants: African Neurobiobank sample storage for research (24.5%; M: 29.7%, F: 19.4%, p = 0.151). Two out of ten were
for Precision Stroke Medicine ELSI Project willing to donate brain after death (18.8%, M: 22.6%, F: 15.0%, p<0.001). Main reasons for
(U01HG010273), SIREN (U54HG007479), SIBS unwillingness to donate brain were; to go back to God complete (46.6%) and lack of knowl-
Genomics (R01NS107900), SIBS Gen Gen
edge related to brain donation (32.7%). Only a third of the participants were aware of
(R01NS107900?02S1), ARISES (R01NS115944?
01), H3Africa CVD Supplement (3U24HG009780? informed consent (31.7%; M: 35.9%, F: 27.5%, p<0.001). Predictors of positive attitude
03S5), CaNVAS (1R01NS114045-01), Sub- towards biobanking and informed consent were being married, tertiary level education, stu-
Saharan Africa Conference on Stroke (SSACS)
dent status, and belonging to select ethnic groups.
1R13NS115395-01A1 and Training Africans to
Lead and Execute Neurological Trials & Studies
(TALENTS) D43TW01203. Conclusion
Competing interests: The authors have declared There is a greater need for research attention in the area of brain banking and informed con-
that no competing interests exist. sent. Improved context-sensitive public education on neurobiobanking and informed con-
sent, in line with the sociocultural diversities, is recommended within the African sub region.
Introduction
Biobanking and genomic research are becoming increasingly important for health and disease
research in developing countries including the African sub region. There are increasing efforts
to capture global genetic diversity in an attempt to ensure that the benefits of genomic innova-
tion filter down to all people around the globe [1]. Neurobiobanking, the storage of central
nervous system tissues, including fixed and frozen whole brain, brain sections, brain biopsies,
spinal cord, associated blood fractions, and relevant datasets stored for research purposes, is
also expanding in Africa [2]. With the huge human genomic diversity, coupled with an ageing
population and associated brain disorders, the Ibadan Brain Ageing, Dementia And Neurode-
generation (IBADAN) Brain Bank [2], the first organized brain tissue biorepository in sub-
Saharan Africa (sSA), was set up to accrue, process and store unique brain tissues for future
research into a broad spectrum of neurological disorders such as stroke and dementias. Future
discoveries emanating from these resources and systems have an immeasurable potential
health benefit to people of African ancestry and other ancestral populations [3]. Despite these
groundbreaking advancements in genomic research within the African research context, sev-
eral questions related to the ethical, legal and social aspects of neurobiobanking remain unan-
swered. For instance, among Africans, communal informed consent is preferred to individual
informed consent, given that the African context tends to prioritize values like communitari-
anism and reciprocity over respect for autonomy [4]. Also, relationship between people and
considerations of community benefit are considered equally important [5]. However, the suc-
cess of biobanking depends on people’s willingness to contribute their biological samples for
storage towards research. Public support is thus essential in securing the sustainability of bio-
banks. A review of studies conducted globally indicated willingness to donate by individuals,
despite poor knowledge [6]. However, some studies have indicated that biobanking-knowl-
edge, type of donated tissue, purpose of research, safety of the data, preferred type of consent,
and trust towards biobanks are all influential factors related to willingness to donate [7–9].
Studies conducted in the African sub region such as Nigeria indicates a high level of awareness
but poor willingness towards organ donation such as brain, among older Nigerians [10].
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 2 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Nevertheless, studies conducted in Europe and America indicate a generally positive attitude
towards biobanking and a high willingness to donate, but these concepts have not been sub-
stantially investigated within the African sub region [11–13].
Given the unique socio-cultural, linguistic and belief systems of Africans, the ethical, legal
and social implications (ELSI) of emerging biobanks including neurobiobanks and data
resources in Africa require detailed exploration [14]. The objectives of this study were to evalu-
ate the awareness and willingness of community members in Ghana and Nigeria towards
donation/sharing of blood and brain samples for neurobiobanking and genetic research and
their preferences regarding informed consent for participation.
Materials and methods
Study design, participants, sampling and setting
A cross-sectional survey was conducted among community-dwelling laypersons from seven
sites within our existing established SIREN (Stroke Investigative Research and Education Net-
work) [1], from Ghana and Nigeria. The SIREN study has a cohort of stroke survivors, caregiv-
ers and healthy controls [15]. Participants from five (5) communities in Nigeria (Abeokuta,
Ibadan, Ilorin, Kano and Zaria) and two (2) communities in Ghana (Accra and Kumasi) were
included. As described in the protocol manuscript of the study community-dwelling layper-
sons were recruited from the seven SIREN participating sites during community engagement
programmes regularly organized to promote stroke awareness in the community and also
recruit suitable controls for the ongoing study [14]. The number of participants surveyed per
site was proportionate to the size of SIREN recruitment from each site. Respondents were
selected by stratified random sampling using the list of participants at the community engage-
ment programme list as sampling frame. Detailed information on the seven participating sites
has been published elsewhere [14]. The sample size was estimated based on preliminary data,
which showed 48.7% of stroke patients and 57.0% of stroke-free individuals have knowledge of
stroke heritability [16]. We used knowledge of stroke heritability as a proxy for awareness
about stroke genomics research, which was one of the goals of the ELSI project. The effective
sample size estimated was 975 based on a 3% degree of precision and 95% confidence level and
adjusting for 85% anticipated response rate.
Study tool and data collection
A survey questionnaire (S1 File) was used to collect information from the participants. The
study questionnaire was developed by a multidisciplinary expert-working group and informed
by a systematic review of the literature and our findings from previous studies [1, 2, 17].
Survey measures
1. Information on participant demographics includes age, religion, ethnicity, educational
qualification, occupation, marital status, monthly income and living arrangement.
2. Awareness and knowledge related to blood/brain fraction donation
3. Willingness to give consent for blood and brain sample donation for genetic research and
storage.
4. Awareness and perception of informed consent.
Trained interviewers at each SIREN site administered the questionnaire and written informed
consent was obtained prior to completion of the survey. All participants received a brief
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 3 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
education on the concepts being explored in the questionnaire such as informed consent and
their meaning and in some cases an explanatory note was provided with the question eg.
broad consent (Informed consent only needs to be taken once and this covers for all other use
of my sample by researchers) for research on the blood collected from me as it is sometimes
practically difficult to re-contact and re-consent participants.
Ethical consideration
Ethical approval was sought from the Institutional Health Research review board of each par-
ticipating SIREN site (the University of Ibadan; Federal Medical Centre, Abeokuta; University
of Ilorin; Aminu Kano Teaching Hospital, Kano; Ahmadu Bello University, Zaria; University
of Ghana, Accra and Kwame Nkrumah University of Science and Technology, Kumasi). Con-
fidentiality of data was ensured throughout all phases of the study. Data were analyzed anony-
mously, with only members of the study in charge of data analysis having access to collected
data. Confidentiality of data continued until the full manuscript was finalized. After publica-
tion, the data will be safely stored with continued maintenance of confidentiality.
Statistical analysis
Descriptive statistics was used to summarize the demographic characteristics of the partici-
pants. For hypothesis testing, χ2 or Fisher’s exact test was used to investigate factors associated
with awareness of brain/blood donation, willingness to share blood/brain tissues with other
researchers and awareness and perception of informed consent. The Mann-Whitney U test
was used to analyze ranked responses including participants’ preferences for receiving genetic
test results. Random-effect logistic regression models were fitted to identify the socio-demo-
graphic characteristics associated with willingness to share blood/brain fraction and awareness
of informed consent. For all statistical analyses, a p-value < 0.05 was considered significant at
95% confidence levels.
Results
Socio-demographic characteristics of participants
A total of 1015 community members, mean age 39.3 years (SD 19.5) with an equal representa-
tion of males and females completed the interviewer-administered questionnaire in the
selected study sites in Ghana and Nigeria. The socio-demographic characteristics of the study
participants are summarized in Table 1.
Table 1 shows that over 70% of the participants were below 50 years of age. Over half of the
participants were married (54%) and had tertiary education (51%). Two-thirds of the partici-
pants were Christians (62.9%) and close to half of the participants belonged to the Yoruba eth-
nic groups (47.9%) followed by the Hausa groups (15.6%) (p< 0.001).
Awareness of blood donation
Table 2 summarizes awareness of respondents to blood donation. Only a third of the partici-
pants had previously heard of blood donation for research (M: 42.4%, F: 32.0%, p,<0.01) and
less than a third (24.5%; M: 29.7%, F: 19.4%, (p<0.01) were aware of blood sample storage for
research.
As shown in Table 2, hospitals were the main source of where participants obtained infor-
mation on blood donation (65.3%; M: 58.3, F: 74.7%, p<0.001) followed by internet and online
sources (17.7%; M: 23.2%, F: 10.5%, p<0.001). Close to 90% (n = 913) of participants were not
aware of any guidelines regulating blood sample storage for genomic research.
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 4 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 1. Socio-demographic characteristics of study participants.
Characteristics Male (n = 509) Female (n = 506) Total (n = 1015) p-value
Age: Mean(SD) 39.62 (23.06) 38.91 (15.16) 39.27 (19.52) 0.561
Age group n (%) n (%) n (%)
< 50 387 (76.33) 377 (74.80) 764 (75.57) 0.571
> = 50 120 (23.67) 127 (25.20) 247 (24.43
Domicile
Rural 21 (4.14) 27 (5.36) 48 (4.75) 0.470
Semi-urban 131 (25.84) 140 (27.78) 271 (26.81)
Urban (Ref) 355 (70.02) 337 (66.87) 692 (68.45)
Education
None 16 (3.14) 50 (9.88) 66 (6.50) <0.001
Arabic� 4 (0.79) 11 (2.17) 15 (1.48)
Primary 45 (8.84) 74 (14.62) 119 (11.72)
Secondary 132 (25.93) 163 (32.21) 295 (29.06)
Tertiary 312 (61.30) 208 (41.11) 520 (51.23)
Average monthly income
< = 100 USD 269 (54.79) 292 (61.47) 561 (58.07) 0.004
> 100 USD 222 (45.21) 183 (38.53) 405 (41.93)
Marital status
Single 230 (45.19) 160 (31.62) 390 (38.42) <0.001
Married 261 (51.28) 291 (57.51) 552 (54.38)
Formerly married 18 (3.54) 55 (10.87) 73 (7.19)
Living arrangement
Alone 160 (31.43) 89 (17.59) 249 (24.53) <0.001
With spouse and children 251 (49.31) 281 (55.53) 532 (52.41)
With children 11 (2.16) 52 (10.28) 63 (6.21)
With others 87 (17.09) 84 (16.60) 171 (16.85)
Religion
Christianity 308 (60.51) 331 (65.42) 639 (62.96) 0.091
Islam 196 (38.51) 174 (34.39) 370 (36.45)
Others 5 (0.98) 1 (0.20) 6 (0.59)
Ethnic group
Yoruba 229 (44.99) 257 (50.79) 486 (47.88) <0.001
Igbo 23 (4.52) 11 (2.17) 34 (3.35)
Hausa 92 (18.07) 66 (13.04) 158 (15.57)
Akan 60 (11.79) 84 (16.60) 144 (14.19)
Ga/Adangbe 32 (6.29) 34 (6.72) 66 (6.50)
Ewe 8 (1.57) 11 (2.17) 19 (1.87)
Others 65 (12.77) 43 (8.50) 108 (10.64)
Primary Occupation
Highly skilled 69 (13.56) 34 (6.72) 103 (10.15) <0.01
Skilled 126 (24.75) 122 (24.11) 248 (24.43)
Semi-skilled 84 (16.50) 110 (21.74) 194 (19.11)
Manual work 53 (10.41) 96 (18.96) 149 (14.68)
Not working 72 (14.15) 84 (16.60) 156 (15.37)
Students 105 (20.63) 60 (11.86) 165 (16.26)
�Arabic schools are common in Northern Nigeria. They do some sorts of formal education, but the focus is Quran. It is not equivalent to “No formal education”.
https://doi.org/10.1371/journal.pone.0267705.t001
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 5 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 2. Awareness and knowledge related to blood sample donation.
Variable/question Male (n = 509) Female (n = 506) Total (n = 1015) p-value
Ever heard of blood sample donation for medical research n (%) n (%) n (%)
Yes 216 (42.44) 162 (32.02) 378 (37.24) 0.001
No 293 (57.56) 344 (67.98) 637 (62.76)
Ever heard of blood sample storage for research purpose
Yes 151 (29.67) 98 (19.37) 249 (24.53) <0.001
No 358 (70.33) 408 (80.63) 766 (75.47)
Sources of information about blood sample donation
Hospital 126 (58.33) 121 (74.69) 247 (65.34) <0.001
Training program 21 (9.72) 13 (8.02) 34 (8.99) 0.568
Friend 31 (14.35) 11 (6.79) 42 (11.11) 0.021
Colleague 16 (7.41) 7 (4.32) 23 (6.08) 0.214
Newspaper/magazine 18 (8.33) 5 (3.09) 23 (6.08) 0.035
Internet/online resources 50 (23.15) 17 (10.49) 67 (17.72) 0.001
Seminar/conference/workshop 23 (10.65) 5 (3.09) 28 (7.41) 0.005
TV 29 (13.43) 7 (4.32) 36 (9.52) 0.003
Radio 29 (13.43) 10 (6.17) 39 (10.32) 0.022
Outreach 27 (12.50) 13 (8.02) 40 (10.58) 0.162
Family 9 (4.17) 6 (3.70) 15 (3.97) 0.820
Sources of information about blood sample storage for research
Hospital 86 (56.95) 69 (70.41) 155 (62.25) 0.032
Training program 17 (11.26) 10 (10.20) 27 (10.84) 0.794
Friend 18 (11.92) 10 (10.20) 28 (11.24) 0.675
Colleague 8 (5.30) 4 (4.08) 12 (4.82) 0.662
Newspaper/magazine 16 (10.60) 5 (5.10) 21 (8.43) 0.127
Internet/online resources 32 (21.19) 13 (13.27) 45 (18.07) 0.112
Seminar/conference/workshop 19 (12.58) 3 (3.06) 22 (8.84) 0.010
TV 24 (15.89) 6 (6.12) 30 (12.05) 0.021
Radio 18 (11.92) 6 (6.12) 24 (9.64) 0.130
Outreach 15 (9.93) 8 (8.16) 23 (9.24) 0.637
Family 9 (5.96) 1 (1.02) 10 (4.02) 0.052
Awareness about guidelines/regulation for use of blood and its storage for genomic research
Yes 57 (11.20) 45 (8.89) 102 (10.05) 0.222
No 452 (88.80) 461 (91.11) 913 (89.95)
https://doi.org/10.1371/journal.pone.0267705.t002
Awareness of brain donation
As shown in Table 3, awareness of brain donation was lower than blood donation (9.8% com-
pared to 37.2% for blood donation), and over 60% of the respondents were unaware of any
guidelines for brain donation.
Table 3 shows that nearly 9 out of 10 (89.0%) respondents were unaware of anyone who
had agreed to brain donation and only 5.7% had previously heard about collecting and storing
brain for research (M: 7.3%, F: 4.2%, p = 0.032). Likewise, less than a quarter were willing to
donate brain after death (18.8%; M: 22.6%, F: 15.0%, p = 0.002). Main reasons for unwilling-
ness to donate brain samples were: wanting to go back to God complete (46.6%; M: 39.9%, F:
52.8%, p<0.001), lack of knowledge (32.7%; M: 32.0%, F: 33.3%, p = 0.696) and distrust in the
medical system (27.6%; M: 30.2%, F: 25.1%, p = 0.103). Over 80% (85.8%, M: 82.3%, F: 89.1%,
p-0.003) of respondents disagreed with the statement: “people in Africa would be willing to
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 6 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 3. Awareness and knowledge related to brain donation.
Variable/question Male: (n = 509) Female: (n = 506) Total: (n = 1015) p-value
Ever heard of brain donation for research n (%) n (%) n (%)
Yes 53 (10.41) 47 (9.29) 100 (9.85) 0.558
No 456 (89.59) 459 (90.71) 915 (90.15)
Sources of information about brain donation for research
Hospital 14 (26.42) 21 (44.68) 35 (35.00) 0.056
Training program 7 (13.21) 6 (12.77) 13 (13.00) 0.948
Friend 6 (11.32) 6 (12.77) 12 (12.00) 0.824
Colleague 2 (3.77) 0 (0.0) 2 (2.00) 0.179
Newspaper/magazine 8 (15.09) 0 (0.0) 8 (8.00) 0.005
Internet/online resources 16 (30.19) 8 (17.02) 24 (24.00) 0.124
Seminar/conference/workshop 3 (5.66) 2 (4.26) 5 (5.00) 0.748
TV 13 (24.53) 6 (12.77) 19 (19.00) 0.135
Radio 5 (9.43) 5 (10.64) 10 (10.00) 0.841
Outreach 3 (5.66) 2 (4.26) 5 (5.00) 0.748
Family 2 (3.77) 1 (2.13) 3 (3.00) 0.630
Awareness about a brain donor
Yes 6 (11.32) 5 (10.64) 11 (11.00) 0.913
No 47 (88.68) 42 (89.36) 89 (89.00)
Awareness about guidelines for use of brain for research
Yes 10 (27.03) 9 (42.86) 19 (32.76) 0.217
No 27 (72.97) 12 (57.14) 39 (67.24)
Have you ever heard of the concept of collecting and storing brain for research?
Yes 37 (7.27) 21 (4.15) 58 (5.71) 0.032
No 472 (92.73) 485 (95.85) 957 (94.29)
Willingness to donate brain after death
Yes 115 (22.59) 76 (15.02) 191 (18.82) 0.002
No 394 (77.41) 430 (84.98) 824 (81.18)
Reasons for willingness
It will advance medicine 73 (63.48) 41 (53.95) 114 (59.69) 0.189
Prevent future disease 59 (51.30) 24 (31.58) 83 (43.46) 0.007
Don’t need brain after death 38 (33.04) 19 (25.00) 57 (29.84) 0.234
Happy to safe a life 63 (54.78) 37 (48.68) 100 (52.36) 0.409
It can help future generations 41 (35.65) 20 (26.32) 61 (31.94) 0.176
Reasons for not willing to donate brain sample
Want to go back to God complete 157 (39.85) 227 (52.79) 384 (46.60) <0.001
Against my religion 63 (15.99) 62 (14.42) 125 (15.17) 0.530
People will think I am occultic 60 (15.23) 34 (7.91) 94 (11.41) 0.001
Not knowledgeable about it 126 (31.98) 143 (33.26) 269 (32.65) 0.696
Don’t trust Africans 18 (4.57) 28 (6.51) 46 (5.58) 0.225
Don’t trust medical systems 119 (30.20) 108 (25.12) 227 (27.55) 0.103
It’s like destroying the work of God 22 (5.58) 24 (5.58) 46 (5.58) 0.999
I don’t just want to 17 (4.31) 33 (7.67) 50 (6.07) 0.044
People in Africa would be willing to donate brain samples for research purposes
Agree 88 (17.43) 55 (10.91) 143 (14.17) 0.003
Disagree 417 (82.57) 449 (89.09) 866 (85.83)
Actions for promoting brain sample donation for research
Media publicity 325 (63.85) 329 (65.02) 654 (64.43) 0.697
(Continued)
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 7 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 3. (Continued)
Variable/question Male: (n = 509) Female: (n = 506) Total: (n = 1015) p-value
Education 332 (65.23) 314 (62.06) 646 (63.65) 0.294
Legislation 76 (14.93) 75 (14.82) 151 (14.88) 0.961
Involvement of religious and community members 177 (34.77) 149 (29.45) 326 (32.12) 0.069
Education of people on social media 147 (28.88) 127 (25.10) 274 (27.00) 0.175
https://doi.org/10.1371/journal.pone.0267705.t003
donate brain samples for research purposes”. Hospitals and the internet (online communica-
tion platforms) were the main sources of information on brain donation as for blood sample
donation. The main reasons for willingness to donate brain by respondents were: advancement
of medicine (59.7%), happiness to save a life (52.4%), and prevention of future disease (43.5%).
Respondents indicated media publicity (64.4.%) and education (63.7%) as common ways of
further promoting brain donation for research as in Table 3.
Willingness for blood/brain donation/storage and sharing
Table 4 summarizes the willingness for blood/brain donation/sharing and reuse. Majority of
participants were willing to give consent for blood sample donation for research for themselves
(75.3%) and on behalf of their family members (73.9%).
Table 4. Willingness towards blood/brain sample donation/sharing/reuse.
Variable/question Male (n = 509) Female (n = 506) Total (n = 1015) p-value
n (%) n (%) n (%)
Willingness to give consent for blood sample donation for genetic research and storage
Yes 393 (77.21) 371 (73.32) 764 (75.27) 0.151
No 116 (22.79) 135 (26.68) 251 (24.73)
Willingness to give consent for a family member blood sample donation for genetic research and storage
Yes 371 (72.89) 379 (74.90) 750 (73.89) 0.465
No 138 (27.11) 127 (25.10) 265 (26.11)
Blood fractions from me can be shared with other researchers
Yes 352 (69.16) 329 (65.02) 681 (67.09) 0.161
No 157 (30.84) 177 (34.98) 334 (32.91)
Brain tissues from me can be shared with other researchers
Yes 216 (42.44) 156 (30.83) 372 (36.65) <0.001
No 293 (57.56) 350 (69.17) 643 (63.35)
Brain images from me can be shared with other researchers
Yes 299 (58.74) 260 (51.38) 559 (55.07) 0.018
No 210 (41.26) 246 (48.62) 456 (44.93)
Questions related to bio-rights
Do you think participants in researches should have control on how their biological specimens will be
used?
Yes 214 (42.04) 228 (45.06) 442 (43.55) 0.551
No 199 (39.10) 182 (35.97) 381 (37.54)
How much control should/can individuals have regarding how their biological specimens will be used in
research?
None 206 (40.47) 206 (40.71) 412 (40.59) 0.337
Little 137 (26.92) 111 (21.94) 248 (24.43)
Much 96 (18.86) 115 (22.73) 211 (20.79)
Total 43 (8.45) 45 (8.89) 88 (8.67)
https://doi.org/10.1371/journal.pone.0267705.t004
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 8 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Only two out of ten participants were willing to donate brain after death (18.8%, M: 22.6%,
F: 15.0%, p = 0.002) as shown in Table 3. Over 6 out of 10 participants were willing to share
their blood samples with researchers other than those they initially consent to use their data.
However, just about three out of ten were willing to share brain tissues with other researchers
beyond those they initial consent for participation with (36.7%, M: 42.2%, F: 30.8%, p<0.001)
(Table 4). Males were more willing than females to share their brain images with other
researchers (58.7% versus 51.4%, p = 0.018). Whereas about 43% of the respondents wanted to
have some degree of control over their biological samples and their usage, only 8.7% wanted
total control (Table 4).
Awareness and perception of participants about informed consent
Responses to questions related to informed consent are detailed in Table 5. Only a third of the
participants had heard of informed consent (31.7%; M: 35.9%, F: 27.5%, p = 0.004) with a pref-
erence for the broad consent (58.1%).
Table 5. Awareness and perception about informed consent.
Variable/question Male (n = 509) Female (n = 506) Total (n = 1015) p-value
n (%) n (%) n (%)
Heard of informed consent. (% Yes) 183 (35.95) 139 (27.47) 322 (31.72) 0.004
Types of informed consent preferred
Broad 104 (56.83) 83 (59.71) 187 (58.07) 0.447
Restricted 35 (19.13 26 (18.71) 61 (18.94)
Tiered 9 (4.92) 10 (7.19) 19 (5.90)
Dynamic 30 (16.39) 14 (10.07) 44 (13.66)
Persons to be involved before giving informed consent
No one 84 (45.90) 43 (30.94) 127 (39.44) 0.086
Spouse 49 (26.78) 50 (35.97) 99 (30.75)
Children 14 (7.65) 16 (11.51) 30 (9.32)
Parents 24 (13.11) 21 (15.11) 45 (13.98)
Religious leaders and others 12 (6.56) 9 (6.47) 21 (6.52)
It is best to use generic informed consent for community
Agree 89 (48.63) 79 (56.83) 168 (52.17) 0.037
Disagree 92 (50.27) 54 (38.85) 146 (45.34)
Perception about informed consent (% agreed)
Broad informed consent 244 (47.94) 260 (51.38) 504 (49.66) 0.546
should be used for genomic
research.
Consent forms should include a separate section relating to storage and future use of samples and 314 (61.69) 339 (67.00) 653 (64.33) 0.147
data.
It is personal choice to give 372 (73.08) 394 (77.87) 766 (75.47) 0.206
blood for research.
Any blood sample collected 220 (43.22) 251 (49.60) 471 (46.40) 0.122
from me must not be used for any other secondary use.
I will participate in genomic 126 (24.75) 182 (35.97) 308 (30.34) <0.001
research if my community leader agrees
Donor must be contacted 189 (37.13) 217 (42.89) 406 (40.00) 0.109
each time the sample is to be
re-used.
I feel it’s a criminal offence to make profit from sample 268 (52.65) 289 (57.11) 557 (54.88) 0.224
collected from me.
https://doi.org/10.1371/journal.pone.0267705.t005
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 9 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Close to half of the participants agreed on a generic informed consent at the community
level (52.2%; M: 48.6%, F: 56.8%, p = 0.037). While the majority (74.5%) of the participants
agreed that blood donation for research is a personal choice, two-thirds indicated that consent
forms should have a separate section on storage and future use of samples and data. Also, a
third of the respondents indicated that they would participate in genomic research if their
community leaders were involved (30.3%; M: 24.8%, F: 35.9%, p<0.001) (Table 5).
Association of participant characteristics with willingness to donate share
blood/brain sample
Table 6 summarizes the association of participant characteristics with willingness to donate
share blood/brain fraction. Participants with tertiary education were more willing to donate
brain samples for research [OR: 4.04 (C.I: 1.11–14.76) p = 0.034]; permit sharing their brain
tissues with other researchers [OR: 3.82 (C.I: 1.51–9.68) p = 0.005], give consent for blood
donation for genetic research [OR: 3.45 (C.I: 1.60–7.42), p<0.01] and share their blood sam-
ples with other researchers [OR: 2.59 (C.I: 1.28–5.22), p = 0.002] as compared with participants
without any formal education.
The odds of sharing of brain tissues with other researchers was 1.8 fold higher among those
aged� 50 years as compared to< 50 years [OR: 1.8 (C.I: 1.2–2.8). p = 0.007]. The Ga ethnic
groups in Ghana were more willing to give consent for blood donation (OR: 6.6 (C.I: 1.7–24.3)
p = 0.005); more willing to permit sharing their blood fraction with other researchers (OR: 5.1
(C.I: 1.7–14.8) p = 0.003); more willing to share their brain fractions with other researchers
(OR: 3.7 (C.I: 1.5–9.3) p = 0.006) and also more willing to permit sharing their brain images
with other researchers (OR: 3.9 (C.I: 2.1–7.5) p<0.001) as compared with the Yoruba ethnic
groups in Nigeria.
Association of demographic characteristics with awareness about informed
consent
The association of demographic characteristics with awareness about informed consent is pre-
sented in Table 7. Similar to our findings above, tertiary education was significantly associated
with awareness about informed consent [OR: 6.95 (C.I: 2.8–12.3), p<0.001) as compared with
those with no formal education Table 7.
Awareness about informed consent was higher among the Ewe groups in Ghana [OR: 5.4
(C.I: 1.4–20.9), p = 0.014] and Igbo groups in Nigeria [OR: 3.1 (C.I: 1.2–7.9), p = 0.017) as
compared with the Yoruba groups. Compared to highly skilled groups, all other occupational
groups were less likely to be aware of informed consent processes and options.
Discussion
There is a dearth of research examining concepts within genomic research including informed
consent, neurobiobanking and awareness and willingness to donate biological samples such as
blood and brain within sSA. Our study findings indicate that participants had lower levels of
awareness about brain sample donation for research and low levels of willingness to donate
brain samples (20%) as compared to blood samples (75%). These findings are consistent with
findings from the IBADAN Brain Bank Project in Nigeria in which the awareness related to
brain donation was found to be lower than for other organs [10]. There is generally low level
of awareness of biobanking and organ donation globally, and brain donation for research is
still an evolving concept in sSA [2, 18]. In our study, approximately a third had heard of blood
sample donation for research, whereas only about a tenth had heard of collecting and storing
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 10 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 6. Association of socio demographic characteristics and willingness to donate/share blood/brain samples.
Variable/characteristic AOR (95% CI) p-value
Willingness towards donation of brain sample for research
Gender
Male 1.37 (0.95–1.97) 0.096
Female 1
Domicile
Rural 0.86 (0.34–2.21) 0.760
Semi-urban 0.93 (0.61–1.40) 0.727
Urban 1
Education
None 1
Arabic 3.01 (0.25–35.66) 0.382
Primary 1.65 (0.43–6.34) 0.470
Secondary 3.29 (0.95–11.48) 0.061
Tertiary 4.04 (1.11–14.76) 0.034
Religion
Christianity 1
Islam 1.35 (0.87–2.09) 0.184
Others 3.69 (0.31–44.68) 0.304
Occupation
Highly skilled/professionals 1
Skilled 1.53 (0.72–3.28) 0.267
Semi-skilled 2.04 (0.88–4.74) 0.097
Manual work 1.79 (0.68–4.77) 0.239
Not working 1.17 (0.48–2.84) 0.731
Student 3.79 (1.61–8.94) 0.002
Willingness to permit sharing of brain tissues with other researchers
Age group
< 50 1
> = 50 1.81 (1.18–2.77) 0.007
Gender
Male 1.31 (0.96–1.79) 0.093
Female 1
Domicile
Rural 0.57 (0.25–1.30) 0.182
Semi-urban 1.01 (0.69–1.46) 0.961
Urban 1
Education
None 1
Arabic 0.67(0.07–6.70) 0.732
Primary 1.60 (0.61–4.23) 0.343
Secondary 2.87 (1.18–6.99) 0.021
Tertiary 3.82 (1.51–9.68) 0.005
Religion
Christianity 1
Islam 1.34 (0.92–1.97) 0.130
Others 1.06 (0.09–11.87) 0.963
Ethnic group
(Continued)
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 11 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 6. (Continued)
Variable/characteristic AOR (95% CI) p-value
Yoruba 1
Igbo 1.37 (0.61–3.11) 0.448
Hausa 1.50 (0.85–2.66) 0.162
Akan 1.69 (0.72–3.95) 0.228
Ga/Adangbe 3.67 (1.45–9.27) 0.006
Ewe 3.87 (1.13–13.28) 0.032
Others 1.68 (0.96–2.92) 0.068
Occupation
Highly skilled/professionals 1
Skilled 1.43 (0.81–2.53) 0.221
Semi-skilled 1.88 (0.96–3.67) 0.066
Manual work 1.95 (0.94–4.06) 0.073
Not working 1.26 (0.65–2.47) 0.492
Student 3.86 (1.99–7.48) <0.001
Willingness to give consent to blood donation for genetic research
Gender
Male 1.17 (0.82–1.67) 0.377
Female 1
Education
None 1
Arabic 2.72 (0.55–13.54) 0.220
Primary 2.24 (1.04–4.82) 0.039
Secondary 2.08 (1.04–4.18) 0.040
Tertiary 3.45 (1.60–7.42) 0.002
Religion
Christianity 1
Islam 1.08 (0.73–1.59) 0.694
Others 3.16 (0.27–36.25) 0.356
Ethnic group
Yoruba 1
Igbo 1.63(0.69–3.88) 0.266
Hausa 3.29 (1.70–6.35) <0.001
Akan 8.43 (2.78–25.55) <0.001
Ga/Adangbe 6.55 (1.77–24.32) 0.005
Others 2.93 (1.55–5.53) 0.001
Occupation
Highly skilled/professionals 1
Skilled 0.74 (0.39–1.42) 0.366
Semi-skilled 1.07 (0.48–2.36) 0.870
Manual work 0.80 (0.35–1.83) 0.604
Not working 0.49 (0.24–1.02) 0.057
Student 1.47 (0.65–3.16) 0.326
https://doi.org/10.1371/journal.pone.0267705.t006
brain for research. However, the awareness levels of participants in the IBADAN Brain Bank
Project was higher as compared to ours [10]. This could be attributed to the higher age group
of participants in the IBADAN Brain Bank Project (mean age 46.3 years), though these differ-
ences may also stem from different cultural attitudes towards donation, religious beliefs or low
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 12 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Table 7. Association of socio demographic characteristics and awareness of consent process.
Characteristics AOR (95% CI) p-value
Age group
< 50 1
> = 50 1.28 (0.83–1.98) 0.266
Gender
Male 1.26 (0.90–1.75) 0.173
Female
Domicile
Rural 1.93 (0.92–4.03) 0.080
Semi-urban 1.24 (0.84–1.83) 0.227
Urban 1
Education
None 1
Arabic 0.95 (0.09–9.31) 0.965
Primary 1.08 (0.42–2.83) 0.870
Secondary 2.04 (0.86–4.85) 0.107
Tertiary 6.95 (2.79–12.28) <0.001
Marital status
Single 1
Married 2.44 (1.13–5.27) 0.023
Formerly married 1.59 (0.65–3.89) 0.313
Religion
Christianity 1
Islam 1.01 (0.68–1.52) 0.945
Others 3.37 (0.35–32.18) 0.293
Ethnic group
Yoruba 1
Igbo 3.09 (1.23–7.78) 0.017
Hausa 1.07 (0.53–2.15) 0.852
Akan 0.89 (0.37–2.21) 0.818
Ga/Adangbe 1.83 (0.68–4.91) 0.232
Ewe 5.42 (1.40–20.92) 0.014
Others 2.04 (1.08–3.89) 0.029
Occupation
Highly skilled/professionals 1
Skilled 0.52 (0.29–0.93) 0.029
Semi-skilled 0.36 (0.18–0.73) 0.004
Manual work 0.34 (0.16–0.73) 0.001
Not working 0.45 (0.23–0.89) 0.027
Student 0.18 (0.09–0.37) <0.001
https://doi.org/10.1371/journal.pone.0267705.t007
levels of trust in public institutions (which may result from previous breaches of trust) as
highlighted by Tindana et al. (2012) [19]. Some studies have indicated that biobanking knowl-
edge, type of donated tissue, research purpose, concerns over the safety of the data, preferred
type of consent, and trust towards biobanks, affect willingness to donate [6]. Indeed, over half
of the participants in our study indicated that they were not willing to donate brain because
they wanted to go back to God complete (religious beliefs). Studies conducted in Scandinavian
countries (such as Sweden and Finland) highlight the positive correlation between knowledge
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 13 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
and positive opinions on biobanks with respondents’ willingness to donate; where the knowl-
edge about biobanks is highest, 83% of Finns and 86% of Swedes declared such willingness
[20–22]. Awareness about biobanking is generally low globally and not only confined to the
African Region. In the 2010 Eurobarometer study, for instance, two-thirds of Europeans have
never heard about biobanks and less than 2% search for information about biobanking [13].
Low levels of awareness on biobanking and the increased willingness to donate (mainly blood
and not brain) in our study calls for stakeholders input (general public, religious leaders, scien-
tists, industry, and non-governmental organizations) through community-based participatory
research and citizen science approaches to identify research priorities and actively involve
sample donors in biobanking process and guidelines to further scientific advancements [8, 23,
24].
An important concept in genetic research and biobanking is the process of informed con-
sent. This is required for several reasons including storage of samples (sometimes for an indefi-
nite period) and to use samples for unspecified future research. Only a third of our study
participants were aware of informed consent. This could be attributed to the profile of the par-
ticipants who were largely laypersons in the studied communities with no prior information
on or engagement with biomedical research. Nevertheless, participants generally had a prefer-
ence for the broad type of consent (a process by which individuals donate their samples for a
broad range of unspecified future studies with some restriction) [5, 25, 26]. Although, the
broad type of consent has been proposed as an appropriate consent model in African genomics
research and biobanking [27], it has been linked with the risk of exploitation of African
research populations [4, 25, 28]. Nevertheless, this approach reduces the financial and logistical
barriers to researchers, and the burden to participants, which may be a particular challenge in
many African research settings [8]. Recommendations for the use of the broad consent models
has been to include governance mechanisms that incentivize biobanks to promote the interests
of biological sample donors as well as communities’ health and research needs [8]. Indeed, it
was observed in our study that over half of the participants indicated they agreed with a
generic consent at the community level and a third of the participants indicated that they were
more likely to participate in genomic studies if their community leaders agree. However, over
half of the participants did not know of any guidelines regulating blood and brain biobanking.
The role of a community engagement approach has been found to be a critical component in
the ethical conduct of health research and is particularly pertinent in communitarian societies
such as Africa [29]. Also, national guidelines at the country level within Africa are important
for biobanking to eliminate what has been described as exploitative “parachute” research (a
practice whereby scientists in high-income countries go to low-income countries to collect
specimens and publish findings in prestigious journals without properly crediting collabora-
tors in Low-and-Middle Income Countries or providing tangible benefits to study communi-
ties) [8, 24].
Other factors, such as socio-demographic characteristics, were also associated with willing-
ness to participate in biobanking research. Educational attainment (tertiary education) and
male gender were found to be important predictors of willingness to donate and share both
blood and brain samples for research and having prior awareness about informed consent.
While religious beliefs did not seem to influence participants’ willingness to sample donation
and sharing in our study, in a British study, non-believers and less religious persons were
more interested in donation [18]. Although religious beliefs may not be a determining factor
in biobank participation, it is expected to provide comfort into the willingness to enroll in
research initiatives. For instance, the linkage of Islam with scientific knowledge and advance-
ment, may be influential in increasing awareness towards genetics and biobanking [30]. In
developing interventions, it is thus important to promote better representation of
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 14 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
socioeconomic diversity including religion in research leadership and ensure tailored health
education materials of appropriate literacy to expand genetic education for increased public
awareness and understanding. By expanding participation rates among the diverse populations
within Africa, opportunities exist to better understand the genomic diversity representative
across the continent [27, 28, 31]. Our study also highlights the influence of certain ethnic
groups (Ewe and Igbo groups), who were likely to be aware of informed consent as compared
to the others (Yoruba). This finding needs further studies to explain this observation as it is
beyond the scope of this current study.
This study contributes further to our understanding of communities in Ghana and Nigeria
on views and attitudes towards biological sample donation/sharing and informed consent. It
also reinforces the importance of involving the public in a more transparent dialogue about
the use of biological samples to encourage greater public involvement and support for this area
given the low awareness levels. It indicates the need for good governance concerning biological
samples and their associated data, which requires complex discussions around community
engagement, public learning and understanding of science and ethical principles of informed
consent. The findings of our study should be considered in light of the following limitations:
first, it relies on self-reported data and not objective measurements of awareness, attitudes and
biobanking knowledge, which could be influenced by a social desirability bias. Second, as no
validated tools exist, the authors relied on methods that have been utilized in other genetics lit-
erature. Nevertheless, our study’s large sample size, diverse coverage, and rigorous sampling
strategy of participants are potential strengths.
Conclusion
Our study findings demonstrate that despite inadequate awareness of biobanking, sample
donation and informed consent, there is a high level of public support for, and willingness to
contribute to biobanking related to blood donation (than brain). Individuals with higher edu-
cational levels are more willing to donate samples indicating the need to inform a broader pub-
lic including the older generation and people in rural areas about the role of research
biobanks. Improved public education through strategies including the social media; communi-
cation with representatives of patients’ organizations, local community and other stakeholders;
promotion of active participation and engagement of the community/donors in promoting
the idea of biobanking while taking care of the cultural and religious diversities of the donors
are recommended to mitigate some of the concerns.
Supporting information
S1 File. Questionnaire_survey.
(PDF)
Author Contributions
Conceptualization: Oyedunni Arulogun, Rufus Akinyemi.
Data curation: Joshua Akinyemi.
Formal analysis: Joshua Akinyemi.
Funding acquisition: Oyedunni Arulogun, Rufus Akinyemi.
Project administration: Shadrack Asibey.
Supervision: Arti Singh.
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 15 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
Writing – original draft: Arti Singh.
Writing – review & editing: Oyedunni Arulogun, Michelle Nichols, Benedict Calys-Tagoe,
Babatunde Ojebuyi, Carolyn Jenkins, Reginald Obiako, Albert Akpalu, Fred Sarfo, Kola-
wole 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 Owo-
labi, Bruce Ovbiagele, Rufus Akinyemi.
References
1. Akinyemi RO, Akinwande K, Diala S, et al. Biobanking in a Challenging African Environment: Unique
Experience from the SIREN Project. Biopreservation and Biobanking 2018; 16:217–32. https://doi.org/
10.1089/bio.2017.0113 PMID: 29733683
2. Akinyemi RO, Salami A, Akinyemi J, et al. Brain banking in low and middle-income countries: Raison
D’être for the Ibadan Brain Ageing, Dementia And Neurodegeneration (IBADAN) Brain Bank Project.
Brain Research Bulletin. 2019; 145:136–41. https://doi.org/10.1016/j.brainresbull.2018.08.014 PMID:
30149197
3. de Vries J, Munung SN, Tindana P. Deliberation to Promote Shared Sovereignty in Health Research:
Four Questions to Clarify Goals, Methods, and Scope. American Journal of Bioethics. 2016. https://doi.
org/10.1080/15265161.2016.1214326 PMID: 27653401
4. De Vries J, Munung SN, Matimba A, et al. Regulation of genomic and biobanking research in Africa: A
content analysis of ethics guidelines, policies and procedures from 22 African countries. BMC Medical
Ethics Published Online First: 2017. https://doi.org/10.1186/s12910-016-0165-6 PMID: 28153006
5. Tindana P, De Vries J. Broad Consent for Genomic Research and Biobanking: Perspectives from Low-
and Middle-Income Countries. Annual Review of Genomics and Human Genetics 2016; 17:375–93.
https://doi.org/10.1146/annurev-genom-083115-022456 PMID: 26905784
6. Domaradzki J, Pawlikowski J. Public attitudes toward biobanking of human biological material for
research purposes: A literature review. International Journal of Environmental Research and Public
Health 2019;16. https://doi.org/10.3390/ijerph16122209 PMID: 31234457
7. Mweemba O, Musuku J, Mayosi BM, et al. Use of broad consent and related procedures in genomics
research: Perspectives from research participants in the Genetics of Rheumatic Heart Disease
(RHDGen) study in a University Teaching Hospital in Zambia. Global Bioethics Published Online First:
2019. https://doi.org/10.1080/11287462.2019.1592868 PMID: 33343192
8. Staunton C, Moodley K. Challenges in biobank governance in Sub-Saharan Africa. BMC Medical Ethics
Published Online First: 2013. https://doi.org/10.1186/1472-6939-14-35 PMID: 24025667
9. Tindana PO, Rozmovits L, Boulanger RF, et al. Aligning community engagement with traditional author-
ity structures in global health research: A case study from Northern Ghana. American Journal of Public
Health Published Online First: 2011. https://doi.org/10.2105/AJPH.2011.300203 PMID: 21852635
10. Akinyemi R, Ojagbemi A, Akinyemi J, et al. Gender differential in inclination to donate brain for research
among Nigerians: the IBADAN Brain Bank Project. Cell and Tissue Banking 2019; 20:297–306. https://
doi.org/10.1007/s10561-019-09769-4 PMID: 31028517
11. Antommaria AHM, Brothers KB, Myers JA, et al. Parents’ attitudes toward consent and data sharing in
biobanks: A multisite experimental survey. AJOB Empirical Bioethics 2018; 9:128–42. https://doi.org/
10.1080/23294515.2018.1505783 PMID: 30240342
12. Sanderson SC, Brothers KB, Mercaldo ND, et al. Public Attitudes toward Consent and Data Sharing in
Biobank Research: A Large Multi-site Experimental Survey in the US. American Journal of Human
Genetics 2017; 100:414–27. https://doi.org/10.1016/j.ajhg.2017.01.021 PMID: 28190457
13. Brall C, Berlin C, Zwahlen M, et al. Public willingness to participate in personalized health research and
biobanking: A large-scale Swiss survey. PLoS ONE. 2021; 16. https://doi.org/10.1371/journal.pone.
0249141 PMID: 33793624
14. Akinyemi RO, Jenkins C, Nichols M, et al. Unraveling the Ethical, Legal, and Social Implications of Neu-
robiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for
Precision Stroke Medicine ELSI Project. International Journal of Qualitative Methods 2020;
19:160940692092319. https://doi.org/10.1177/1609406920923194 PMID: 34276269
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 16 / 17
PLOS ONE Biological sample donation and informed consent for neurobiobanking in Ghana and Nigeria
15. Jenkins C, Arulogun OS, Singh A, et al. Stroke Investigative Research and Education Network. Health
Education & Behavior Published Online First: 2016. https://doi.org/10.1177/1090198116634082 PMID:
27037152
16. Akinyemi RO, Sarfo FS, Akinyemi J, et al. Knowledge, attitudes and practices of West Africans on
genetic studies of stroke: Evidence from the SIREN Study. International Journal of Stroke Published
Online First: 2019. https://doi.org/10.1177/1747493018790059 PMID: 30040054
17. Akinyemi RO, Akinyemi JO, Olorunsogbon OF, et al. Gender and educational attainment influence will-
ingness to donate organs among older nigerians: A questionnaire survey. Pan African Medical Journal
2020; 36:1–13. https://doi.org/10.11604/pamj.2020.36.288.21125
18. Gaskell G, Gottweis H, Starkbaum J, et al. Publics and biobanks: Pan-European diversity and the chal-
lenge of responsible innovation. European Journal of Human Genetics 2013; 21:14–20. https://doi.org/
10.1038/ejhg.2012.104 PMID: 22669414
19. Tindana P, Bull S, Amenga-Etego L, et al. Seeking consent to genetic and genomic research in a rural
Ghanaian setting: A qualitative study of the MalariaGEN experience. BMC Medical Ethics Published
Online First: 2012. https://doi.org/10.1186/1472-6939-13-15 PMID: 22747883
20. Tupasela A, Snell K, Sihvo S, et al. Attitudes towards biomedical use of tissue sample collections, con-
sent, and biobanks among Finns. Scandinavian Journal of Public Health 2010; 38:46–52. https://doi.
org/10.1177/1403494809353824 PMID: 19906772
21. Hemminki E, Tupasela A, Jallinoja P, et al. Finnish people’s attitudes towards biomedical research and
its sponsorship. Genomics, Society and Policy 2009; 5:67–79. https://doi.org/10.1186/1746-5354-5-2-
67
22. Kettis-Lindblad Å, Ring L, Viberth E, et al. Perceptions of potential donors in the Swedish public towards
information and consent procedures in relation to use of human tissue samples in biobanks: A popula-
tion-based study. Scandinavian Journal of Public Health 2007; 35:148–56. https://doi.org/10.1080/
14034940600868572 PMID: 17454918
23. Rotimi C, Abayomi A, Abimiku A, et al. Research capacity. Enabling the genomic revolution in Africa.
Science. 2014; 344:1346–8. https://doi.org/10.1126/science.1251546 PMID: 24948725
24. Klingstrom T, Mendy M, Meunier D, et al. Supporting the development of biobanks in low and medium
income countries. In: 2016 IST-Africa Conference, IST-Africa 2016. Institute of Electrical and Electron-
ics Engineers Inc. 2016. https://doi.org/10.1109/ISTAFRICA.2016.7530672
25. Tindana P, Molyneux S, Bull S, et al. ‘It is an entrustment’: Broad consent for genomic research and bio-
banks in sub-Saharan Africa. Developing World Bioethics Published Online First: 2019. https://doi.org/
10.1111/dewb.12178 PMID: 29063669
26. Rutakumwa R, de Vries J, Parker M, et al. What constitutes good ethical practice in genomic research
in Africa? Perspectives of participants in a genomic research study in Uganda. Global Bioethics Pub-
lished Online First: 2019. https://doi.org/10.1080/11287462.2019.1592867 PMID: 33343191
27. Yakubu A, Tindana P, Matimba A, et al. Model framework for governance of genomic research and bio-
banking in Africa–a content description. AAS Open Research 2018; 1:13. https://doi.org/10.12688/
aasopenres.12844.2 PMID: 30714023
28. Vaught J. Biobanking and Biosecurity Initiatives in Africa. Biopreservation and Biobanking 2016. https://
doi.org/10.1089/bio.2016.29009.jjv PMID: 27622547
29. Staunton C, Tindana P, Hendricks M, et al. Rules of engagement: Perspectives on stakeholder engage-
ment for genomic biobanking research in South Africa. BMC Medical Ethics Published Online First:
2018. https://doi.org/10.1186/s12910-018-0252-y PMID: 29482536
30. WHO EMRO | An Islamic perspective on human genetic and reproductive technologies | Volume 12,
supplement 2 | EMHJ volume 12, 2006. http://www.emro.who.int/emhj-volume-12-2006/volume-12-
supplement-2/an-islamic-perspective-on-human-genetic-and-reproductive-technologies.html
(accessed 30 Jul 2021).
31. Igbe MA, Adebamowo CA. Qualitative study of knowledge and attitudes to biobanking among lay per-
sons in Nigeria. BMC medical ethics 2012; 13:27. https://doi.org/10.1186/1472-6939-13-27 PMID:
23072321
PLOS ONE | https://doi.org/10.1371/journal.pone.0267705 August 11, 2022 17 / 17