Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda

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Abstract Background: Return of genetics and genomics research results has been a subject of ongoing global debate on what constitutes socially acceptable and ethical approaches for sharing individual and aggregate genomic results with participants. Such feedback to research participants is an ethical requirement to update participants on results related to the study particularly those that are deemed significant. Although there is limited literature, debate continues in the African setting on what constitutes appropriate practice regarding return of results for genetics and genomics research.The study explored the perspectives and ethical considerations of genomics researchers for return of genetics and genomics research results in a Ugandan setting.Methods: This was a qualitative study of researchers in Uganda using semi-structured interview schedules for In-depth interviews. The researchers were purposively selected based on their active involvement in conducting genetics and genomics research in the country. A total of 30 researchers participated in the study and were interviewed on their perspectives and ethical considerations for the return of genetics and genomics research results. Data were analysed through content analysis along the main themes of the study. Content analysis was conducted using a comprehensive thematic matrix, to identify common patterns arising from the narratives. QSR International NVivo software was used to support data analysis. Findings: Return of genetics and genomics research results was generally acceptable to genomics researchers and some researchers had either returned individual or aggregate results. The main reasons for sharing results included actionability, benefits and the clinical utility of the results to the participants. Ethical considerations for appropriate return of results included a need for effective community engagement, genetic counselling prior to disclosure of the results, adequate informed consent and proper assessment of the implications of, or consequences of returning of results. However, the approaches to return of results is not standardised due to lack of ethics and regulatory guidelines to govern the practice in the country.Conclusion: Return of genetics and genomics research results to participants is generally acceptable to genomics researchers and several researchers have returned either individual or aggregate results. Ethical considerations for return of genetics and genomics research results are numerous though their application is not regulated due to lack of appropriate local ethical guidelines.

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