ELSIcon2022 • Paper • June 2, 2022
Michelle Nichols, Arti Singh, Olorunyomi Olorunsogbon, Ezinne Uvere, Mayowa Ogunronbi, Sylvia Melikam, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Carolyn Jenkins, Mayowa Owolabi, Bruce Ovbiagele, Oyedunni Arulogun, Rufus Akinyemi
Background. Advances within genomic science, biobanking, and precision medicine afford opportunities for the discovery and application of targeted treatment advances. These offer promising hope to address health priority areas, such as stroke, which remains highly prevalent in Sub-Saharan Africa. However, the ethical, legal, and social implications (ELSI) of stroke genomics and biobanking require further exploration.
Methods. We conducted a focused ethnography using Key Informant Interviews (KIIs) and Focus Group Discussions (FGDs) across the Stroke Investigative Research and Education Network (SIREN) sites (n = 7) in Nigeria and Ghana. We developed and Beta tested interview guides prior to implementation. Guides were designed to elicit responses on informed consent, genomic research, biobanking, biospecimen donation, sample re-use, data ownership and bio-rights, and return of findings. Sessions were audio-recorded, transcribed, and translated to English. A framework analytical approach was used for data analysis with confirmability of findings conducted across study sites and among Community Advisory Board (CAB) members.
Results. We conducted KIIs (n=73) and FGDs (n=28). Participants included with stroke survivors, stroke free controls, lay persons, caregivers, and CAB members. Themes highlighted a limited awareness of genomics, biobanking, and precision medicine. The influence of cultural and religious belief systems on participant willingness to engage in genomic and biobanking research and preferences toward informed consent, sample use, benefit sharing, and increased governance were shared.
Conclusions. Expanded understanding on genomic research and biobanking is needed among community members. Specific guidance on bio-rights, sample re-use, benefit sharing, and informed consent processes among others is needed.