Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study

Abstract

Background A fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya. Methods This qualitative study involved focus group discussions (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. The purposively selected participants, included research ethics committee (REC) members (8), community members (44), community resource persons (8), and researchers (9). A semi-structured interview guide was used to facilitate discussions. Six FGDs and twenty-five (IDIs) were conducted among the different stakeholders. The issues explored in the interviews included: (1) views on returning results, (2) kind of results to be returned, (3) value of returning results to participants, and (4) challenges anticipated in returning results to participants and communities. The interviews were audio-recorded, transcribed verbatim, and coded in Nvivo 12 pro. Thematic and content analysis was conducted. Results Participants agreed on the importance of returning genomic results either as individual or aggregate results. The most cited reasons for returning of genomic results included recognizing participants' contribution to research, encouraging participation in future research, and increasing the awareness of scientific progress. Other aspects on how genomic research results should be shared included sharing easy to understand results in the shortest time possible and maintaining confidentiality when sharing sensitive results. Conclusions This study identified key stakeholders’ perspectives on returning genomic results at the individual and community levels in two urban informal settlements of Nairobi. The majority of the participants expect to receive feedback about their genomic results, and it is an obligation for researchers to see how to best fulfil it.

The role of community engagement in promoting research participants’ understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment

“…Research teams should select an approach that is creative, flexible and sensitive to participants’ values, beliefs and education levels. Their views are consistent with a study that explored perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya [ 55 ]. Researchers suggested using music, dance and drama as an approach that could enhance communication of understandable information about pharmacogenomic research and results at community level.…”

Research Participants’ Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute

“…A qualitative study conducted among parents and caregivers of children and adolescents involved in an HIV-TB genomic study in Botswana reported that almost all participants wanted to receive their genetic results (Ralefala et al, 2021). However, satisfying the research participants’ demand for genomics and genetics analyses remains a debate among researchers and bioethicist communities on the African continent (Kasule et al, 2022; Kisiangani et al, 2022; Mwaka et al, 2021b; Ochieng et al, 2021b; Ralefala, Kasule et al, 2022). While these studies highlight the relevance and benefits of sharing genomics results with participants, a number of ethical concerns such as the possibility of misinterpreting these results, unnecessary worry to the participants and family members, and discrimination have been raised (Kaphingst et al, 2016; Yu et al, 2013).…”

‘It is a complex process, but it’s very important to return these results to participants’. Stakeholders’ perspectives on the ethical considerations for returning individual pharmacogenomics research results to people living with HIV

“…The increased demand for individual genomic and pharmacogenomic research results has sparked the need to develop locally contextualized guidelines for returning individual research results to participants (Kisiangani et al, 2022;Mwaka et al, 2021). Several guidelines have described when and how different kinds of results from genomic analyses should be returned (Burke et al, 2013;Green et al, 2013;Matimba et al, 2016).…”

“…Nonetheless, results from pharmacogenomic research have been associated with several ethical and social harms including discrimination (Sarwar, 2023), and loss of privacy and confidentiality (Kisiangani et al, 2022). Specific to communities infected with and affected by HIV, many PLHIV suffer depression (Abas et al, 2018; Bernard et al, 2017), despair (Dela Cruz et al, 2020), distress and fear (dela Cruz et al, 2016) after receiving results that reveal HIV infection.…”