Feedback of Individual Genetic and Genomics Research Results: A Qualitative Study Involving Grassroots Communities in Uganda

Abstract

Abstract: (372 Words) Background: Genetics and genomics research (GGR) is associated with several challenges including, but not limited to, implications of sharing research findings with participants and their family members, issues of confidentiality, determining appropriate methods for providing genetic or genomic information to individuals tested, and ownership of DNA obtained from the samples.  Additionally, GGR holds significant potential risk for social and psychological harms. A considerable amount of research has been conducted with resultant literature and global debate on return of genetic and genomics testing results, but such investigations are limited in the African setting, including Uganda. The objective of the study was to assess perceptions of grassroots communities on if and how feedback of individual genetics and genomics testing results should be carried out in a Ugandan setting.   Methods: This was a cross-sectional study that employed a qualitative exploratory approach. A total of 42 individuals from grassroots communities representing three major ethnic groupings participated in five deliberative focus group discussions. Data were analysed through content analysis along the main themes of the study. NVivo software (QSR international 2020) was used to support data analysis and illustrative quotes were extracted.  Results: Of the 42 respondents 23 (55%) were male with an age range of 18-77 years. Most (70%) were small scale farmers, and the majority were Christians, who were married and had children. They all lived in a rural community in one of the three regions of the country and had no prior participation in GGR. All the respondents were willing to undergo genetics testing and receive feedback of results with the main motivation being diagnostic and therapeutic benefits as well as facilitating future health planning. Content analysis identified three themes and several sub-themes including 1) the need to know one’s health status; 2) ethical considerations for feedback of findings and 3) extending feedback of genetics findings to family and community Conclusion: Participation in hypothetical genetics and genomics research as well as feedback of testing results is acceptable to individuals in grassroots communities. The strong therapeutic misconception linked to GGR is concerning and has implications for consent processes and genetic counselling. Privacy and confidentiality, benefits, risks as well as implications for sharing need to be considered for such feedback of results to be conducted appropriately.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

Research reported in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number U01HG009822 and NIH Fogarty grant under Award Number D43TW01511. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethical review and approval was obtained from the Makerere University School of Biomedical Sciences Higher Degrees and Research Ethics Committee ref. SBS 628 and the Health Research Ethics Committee, Stellenbosch University ref. HREC 16853, followed by clearance by the Uganda National Council for Science and Technology (UNCST) ref. SS268ES

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Data Availability

The data underlying the results presented in the study are available and will be provided by the corresponding author if this manuscript is accepted for publication.

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