Research participants and stakeholders’ views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana

Abstract

Background There is evidence that variants of the Apolipoprotein L1 gene in Africans and people of African descent increase the risk of developing chronic kidney disease (CKD). A study conducted by the H3Africa Kidney Disease Research Network showed that 28.2% of the Ghanaian study population carried 2 APOL1 high-risk variants. Relatives of patients with CKD may be at increased risk of developing CKD. Researchers of this project are faced with an ethical dilemma of whether, study participants and their relatives should be informed about their risk of developing CKD. The aim of this study was to investigate perspectives of research participants and other research stakeholders on returning individual genetic findings and aggregate results related to the kidney disease research at the Korle Bu Teaching Hospital in the Greater Accra Region of Ghana. Methods This study was conducted under the auspices of the H3Africa Community Engagement and Biobanking in Genomics collaborative project. An exploratory qualitative approach was employed utilising in-depth interviews, focus group discussions and deliberative workshops. Participants included genomic researchers, research participants, family members and members of the research ethics committee affiliated with the Korle-Bu Teaching Hospital and the Ghana Health Service in Accra, Ghana. Thematic analysis was performed using NVivo qualitative analysis software (version 12) to examine perspectives on what results to return, who should receive these results and how they should be communicated. Results There was consensus among the key stakeholders interviewed that both validated individual genetic results and aggregate results from the kidney disease research should be communicated to research participants and their relatives, as well as aggregate research results to communities. Most research participants expressed a preference for receiving individual genetic results through direct communication from a medical doctor or research scientist. Participants also suggested the use of traditional media to communicate aggregate results to broader communities. Conclusion The study concludes that there are compelling reasons for communicating both individual and aggregate genetic research results related to kidney disease research with participants, their relatives and communities. More efforts should be invested in educating research participants, families and communities about the risks associated with the APOL1 risk variants prior to returning these results. Additionally, research teams should explore innovative communication strategies to support the feedback process and to promote public engagement in genetic and genomic research.