IADR Abstract Archives
Perspectives of African Community Gatekeepers on Outcomes of Genomic Research
Objectives: A fundamental ethical issue in genetic and genomic research (GGR) is the question of how socio-cultural factors impact the perception and utility of genetic and genomic information. In the context of orofacial cleft (OFCs) in Africa, secondary genetic findings (SFs) could add to the existing stigmatization, exacerbating disease impact on affected families. Understanding the perspectives of key community stakeholders due to their influence could help develop strategies to communicate and act on findings from GGR. Thus, the study aims to investigate the perspective of gatekeepers concerning genomic risk communication (GRC) in the presence of OFCs in minority populations.
Methods: Twenty-five focus group discussions were conducted with gatekeepers {community, ethnic, religious leaders, and traditional birth attendants (TBAs)} in Lagos, Nigeria. A semi-structured questionnaire was used to guide the discussion assessing the perspective of gatekeepers about opinions on members' acceptance of SFs and the possibility of involvement in collaborative decision-making for GRC. Transcripts from audio recordings were coded in NVivo 12, followed by thematic analysis.
Results: Three main themes; knowledge, beliefs, and willingness to act. Participants were knowledgeable about GGR, showed positive interest in GRC, and recommended using social gatherings (community/ religious) to improve awareness and build a relationship with the community. However, mixed opinions were recorded regarding the acceptance of SFs. Moreso, religious leaders stressed the importance of prayers in disease management, while TBAs acknowledged their influence based on previous community health involvement
Conclusions: The study found that the return of GGR is generally acceptable to community gatekeepers. Participants also leaned positively towards collaborating with researchers for GRC. Lessons learned could help contribute to the global ethical debate in genomics research by developing appropriate community engagement strategies to manage conflicting ideologies surrounding genomic information in minority populations while allowing for a more equitable utilization of advances in genomics research.
Methods: Twenty-five focus group discussions were conducted with gatekeepers {community, ethnic, religious leaders, and traditional birth attendants (TBAs)} in Lagos, Nigeria. A semi-structured questionnaire was used to guide the discussion assessing the perspective of gatekeepers about opinions on members' acceptance of SFs and the possibility of involvement in collaborative decision-making for GRC. Transcripts from audio recordings were coded in NVivo 12, followed by thematic analysis.
Results: Three main themes; knowledge, beliefs, and willingness to act. Participants were knowledgeable about GGR, showed positive interest in GRC, and recommended using social gatherings (community/ religious) to improve awareness and build a relationship with the community. However, mixed opinions were recorded regarding the acceptance of SFs. Moreso, religious leaders stressed the importance of prayers in disease management, while TBAs acknowledged their influence based on previous community health involvement
Conclusions: The study found that the return of GGR is generally acceptable to community gatekeepers. Participants also leaned positively towards collaborating with researchers for GRC. Lessons learned could help contribute to the global ethical debate in genomics research by developing appropriate community engagement strategies to manage conflicting ideologies surrounding genomic information in minority populations while allowing for a more equitable utilization of advances in genomics research.