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Case Reports
. 2023 Oct;18(4):218-232.
doi: 10.1177/15562646231187434. Epub 2023 Jul 13.

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

Sylvia Nabukenya  1   2 , Catriona Waitt  2   3 , Ronald Senyonga  1 , Barbara Castelnuovo  1 , Ian Guyton Munabi  1 , David Kyaddondo  1 , Erisa S Mwaka  1
Affiliations
Case Reports

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

Sylvia Nabukenya et al. J Empir Res Hum Res Ethics. 2023 Oct.

Abstract

Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5 deliberative focus group discussions with 30 purposively selected research participants. Almost all (98%) participants wanted to receive individual pharmacogenomics research results. Reasons for the desire to receive results were reciprocity for valuable time and effort, preparing for future eventualities, and the right to information about their health. Overall, participants desire to receive feedback from pharmacogenomics research, particularly if results are well established and clinically actionable.

Keywords: HIV/AIDS; participants; pharmacogenomics; preferences; research results.

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Conflict of interest statement

Declaration of Conflict of Interest

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Participants’ preferences for individual pharmacogenomics research results.
Figure 2.
Figure 2.
Categories of incidental findings from pharmacogenomics research (N = 72).
Figure 3.
Figure 3.
Participants’ reasons for the desire to receive primary results and incidental findings.
Figure 4.
Figure 4.
Participants reasons for receiving partial results or none of the results.
See this image and copyright information in PMC

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