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

IF 1.7 4区哲学 Q2 ETHICS

Journal of Empirical Research on Human Research Ethics Pub Date : 2023-10-01 Epub Date: 2023-07-13 DOI:10.1177/15562646231187434

Sylvia Nabukenya, Catriona Waitt, Ronald Senyonga, Barbara Castelnuovo, Ian Guyton Munabi, David Kyaddondo, Erisa S Mwaka

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引用次数: 1

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.

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研究参与者对药物基因组学研究个体结果的偏好：以乌干达HIV研究所为例。

人们对艾滋病毒感染者是否愿意接受药物基因组学研究的结果知之甚少。本研究探讨了影响参与者偏好的因素，以及他们希望从药物基因组学研究中获得个体结果的原因。我们采用了一种趋同的平行混合方法研究设计，包括对225名研究参与者的调查和对30名有目的选择的研究参与者的5次审议焦点小组讨论。几乎所有（98%）的参与者都希望获得个体药物基因组学研究结果。渴望获得结果的原因是对宝贵时间和精力的互惠，为未来可能发生的事情做准备，以及获得健康信息的权利。总的来说，参与者希望从药物基因组学研究中获得反馈，特别是如果结果已经确定并在临床上可行的话。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Empirical Research on Human Research Ethics 医学-医学：伦理

CiteScore

3.50

自引率

7.70%

发文量

审稿时长

>12 weeks

期刊介绍： The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.

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