African Population and Health Research Center (APHRC), P.O. Box 10787, Nairobi, 00100, Kenya.
School of Public Health, College of Health Sciences, University of Ghana, Legon, Ghana.
BMC Med Ethics. 2022 Mar 18;23(1):27. doi: 10.1186/s12910-022-00767-y.
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.
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.
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.
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.
在进行基因组学研究时，一个基本的伦理挑战是，个体水平的遗传发现和综合基因组结果应该如何传达给研究参与者和社区。这是在指导方针、政策和经验都很有限的情况下，特别是在非洲。本研究的目的是探讨肯尼亚关键利益攸关方对向参与者返还基因组学研究结果的看法。
这项定性研究包括与 69 名利益攸关方进行焦点小组讨论（FGD）和深入访谈（IDI）。有针对性地选择了研究伦理委员会（REC）成员（8 人）、社区成员（44 人）、社区资源人员（8 人）和研究人员（9 人）作为参与者。使用半结构化访谈指南来促进讨论。在不同的利益攸关方中进行了六次 FGD 和二十五次（IDI）。访谈中探讨的问题包括：（1）对返回结果的看法，（2）要返回的结果类型，（3）向参与者返回结果的价值，以及（4）向参与者和社区返回结果预期的挑战。访谈进行了录音、逐字记录，并在 Nvivo 12 pro 中进行了编码。进行了主题和内容分析。
参与者一致认为返回基因组结果（无论是个体结果还是综合结果）都很重要。返回基因组结果的最主要原因包括承认参与者对研究的贡献、鼓励参与未来的研究以及提高对科学进步的认识。分享基因组研究结果的其他方面包括在尽可能短的时间内分享易于理解的结果，并在分享敏感结果时保持机密性。
本研究确定了内罗毕两个城市非正规住区的关键利益攸关方对在个人和社区层面返还基因组结果的看法。大多数参与者期望收到他们的基因组结果的反馈，研究人员有义务找出如何最好地满足这一期望。
