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

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.

When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes

“…While some studies did not find a relationship between religious beliefs and donors’ willingness to donate (Merdad et al, 2017 ; Pawlikowski et al, 2022 ; Pulley et al, 2008 ; Singh et al, 2022 ), this study has identified that religion can play a crucial—albeit indirect—role in shaping future HCPs’ attitudes toward biobanking. Thus, it supports observation made by Machin et al’ ( 2020 ) who stresses the complexity of donation system and situate various body parts and body products within the hierarchy of systems involved in the donation process (tissues and cells, organs, biological systems, the person, family, community, culture, society, and nation) and stress that faith and culture are among the most important dimensions that influence people’s decision to donate.…”

“…Simultaneously, as research biobanks in Poland were established only recently biobanking still rises many ethical, moral, or religious concerns to which religious people can object. Consequently, since religious people are more prone to frame biomedical research as controversial, religion can influence people’s motivations for nonparticipation in biobank research (Broekstra et al, 2021 ; Goodson & Vernon, 2004 ; Heredia et al, 2017 ; Lewis et al, 2013 ; Lipworth et al, 2009 ; McDonald et al, 2012 ; Sanderson et al, 2017 ; Singh et al, 2022 ).…”

“…For example, while people want biobanks to take account of their religious beliefs, many donors are afraid that some research may conflict with their religious, spiritual, ethical, moral, cultural, or philosophical values (De Vries et al, 2016a ; Eisenhauer & Arslanian-Engoren, 2016 ; Yeary et al, 2020 ). Such research may include embryonic stem cell research, germ-line gene therapy, human cloning, animal research, creation of immortalized cell lines, or human–animal hybrids that can be seen as ‘playing God’ (Goodson & Vernon, 2004 ; Heredia et al, 2017 ; Lewis et al, 2013 ; Lipworth et al, 2009 ; Singh et al, 2022 ). Religion can also oppose the usage of biospecimens for commercial research (Kraft et al, 2018 ).…”

Research participants’ perception of ethical issues in stroke genomics and neurobiobanking research in Africa

“…Free and informed consent, as the process of engaging potential participants, remains the solution to avoid coercion and inducement. Similarly, majority in our previous study opined that donation for genomic research should be a personal decision[21]. Due to the nature of genomic and neurobiobanking research, participation would be determined by how well participants are recruited and retained in the study.…”

What Can We Still Learn from Brain Autopsies in COVID-19?

“…Before the pandemic, brain banks existed in a small number of low-middle-income countries, and this limited infrastructure has been unstable given reasons that include lack of funding, population-specific sociocultural and linguistic barriers, and limited awareness about brain sample donation for research. 88,89 Nevertheless, as SARS-CoV-2 infections relentlessly continue, brain autopsies remain critical to validate experimental models, move beyond hypotheses and provide answers to the public about the natural evolution of COVID-19 and how vaccination and various treatments might minimize the effects of the virus on the human body.…”