Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study
Date
2022
Journal Title
Journal ISSN
Volume Title
Publisher
BMC
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.
Description
Research Article
Keywords
Genomics, Return of results, Aggregate level, Individual level