COMMUNITY INSIGHT ON THE ETHICAL, LEGAL, AND SOCIAL IMPLICATIONS OF STROKE GENOMIC AND BIOBANKING RESEARCH IN SUB-SAHARAN AFRICA

Abstract

Background Sub-Saharan Africa (SSA) continues to have a high prevalence of stroke. While rapid advancements in genomic science, biobanking, and precision medicine provide insight and opportunities for targeted treatment advances, the ethical, legal, and social implications (ELSI) of stroke genomics and biobanking require further exploration. Methods We conducted a descriptive qualitative focused ethnography using Key Informant Interviews (KIIs) and Focus Group Discussions (FGDs) across our team's existing Stroke Investigative Research and Education Network (SIREN) sites (n = 7) in Nigeria and Ghana. Interview guides were developed with expert input and beta tested prior to use and questions elicited perspectives on brain and blood donation, genomic research, biobanking, sample re- use, bio-rights, data ownership, informed consent, and return of findings. Audio-recorded interviews were transcribed and translated to English. Data analysis, using a framework analytical approach, was conducted. Site Community Advisory Board (CAB) members confirmed interpretation. Results We conducted KIIs (n =70) and FGDs (n =28) across the seven sites with stroke survivors, stroke free controls, lay persons, caregivers, and CAB members. Themes included limited awareness of genomics, biobanking, and precision medicine, informed consent preferences, the influence of cultural and religious beliefs on willingness to donate biospecimens, and the ELSI of sample sharing/data re-use. Belief systems and knowledge strongly influenced willingness to engage in genomic and biobanking research and participants conveyed desire for increased governance, autonomy over sample use, and benefit sharing. Conclusions Stakeholder input, obtained through qualitative inquiry, is critical in the design, conduct, and oversight of genomic and biobanking science. Sub-Saharan Africa (SSA) continues to have a high prevalence of stroke. While rapid advancements in genomic science, biobanking, and precision medicine provide insight and opportunities for targeted treatment advances, the ethical, legal, and social implications (ELSI) of stroke genomics and biobanking require further exploration. We conducted a descriptive qualitative focused ethnography using Key Informant Interviews (KIIs) and Focus Group Discussions (FGDs) across our team's existing Stroke Investigative Research and Education Network (SIREN) sites (n = 7) in Nigeria and Ghana. Interview guides were developed with expert input and beta tested prior to use and questions elicited perspectives on brain and blood donation, genomic research, biobanking, sample re- use, bio-rights, data ownership, informed consent, and return of findings. Audio-recorded interviews were transcribed and translated to English. Data analysis, using a framework analytical approach, was conducted. Site Community Advisory Board (CAB) members confirmed interpretation. We conducted KIIs (n =70) and FGDs (n =28) across the seven sites with stroke survivors, stroke free controls, lay persons, caregivers, and CAB members. Themes included limited awareness of genomics, biobanking, and precision medicine, informed consent preferences, the influence of cultural and religious beliefs on willingness to donate biospecimens, and the ELSI of sample sharing/data re-use. Belief systems and knowledge strongly influenced willingness to engage in genomic and biobanking research and participants conveyed desire for increased governance, autonomy over sample use, and benefit sharing. Stakeholder input, obtained through qualitative inquiry, is critical in the design, conduct, and oversight of genomic and biobanking science.