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

Joseph Ochieng,John Barugahare,Betty Kwagala,Nelson K Sewankambo,Joseph Ali,Erisa Mwaka,Deborah Ekusai-Sebatta

doi:10.1186/s12910-021-00724-1

Joseph Ochieng, John Barugahare + Show 5 more

Open Access

https://doi.org/10.1186/s12910-021-00724-1

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Abstract

BackgroundThe return of genetics and genomics research results has been a subject of ongoing global debate. Such feedback is ethically desirable to update participants on research findings particularly those deemed clinically significant. Although there is limited literature, debate continues in African on what constitutes appropriate practice regarding the return of results for genetics and genomics research. This study explored perspectives and ethical considerations of Ugandan genomics researchers regarding the return of genetics and genomics research results.MethodsThis was a qualitative study that employed in-depth interviews. Thirty participants were purposively selected based on their expertise as genomics researchers in Uganda. Data were analysed through content analysis along the main themes of the study using a comprehensive thematic matrix, to identify common patterns arising from the narratives. NVivo software 12 was used to support data analysis.ResultsThe return of genetics and genomics research results was generally acceptable to researchers, and some indicated that they had previously returned individual or aggregate results to participants and communities. The main reasons cited for sharing research results with participants included their clinical utility, actionability and overall benefit to society. 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 were perceived as unstandardized due to the lack of appropriate regulatory frameworks.ConclusionsThe return of genetic and genomic research results is generally acceptable to researchers despite the lack of appropriate regulatory frameworks. Ethical considerations for return of genetics and genomics research results are highly divergent, hence the need for national ethical guidelines to appropriately regulate the practice.

Highlights

The return of genetics and genomics research results has been a subject of ongoing global debate
In a study conducted in Uganda, Rutakumwa et al [6] reported that participants of genomic research were very much interested in the clarity of the nature and timing of return of genomic research findings
Data were collected between July 2019 and September 2020 among researchers who were actively involved in Genetics and genomics research (GGR)

Summary

Introduction

The return of genetics and genomics research results has been a subject of ongoing global debate Such feedback is ethically desirable to update participants on research findings those deemed clinically significant. Feedback to research participants is an ethical requirement aimed at updating participants on study findings those deemed clinically significant It has been observed by the Human Health Heredity (H3Africa) network that there is limited guidance on the return of GGR results to research participants in Africa [19]. Ethical conduct of GGR requires clear understanding of the culture, traditions, and perceptions of the local research community; this data is largely missing, especially from subSaharan Africa.

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