Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.

IF 1.7 4区哲学 Q2 ETHICS

Journal of Empirical Research on Human Research Ethics Pub Date : 2021-12-01 DOI:10.1177/15562646211043985

Dimpho Ralefala, Mary Kasule, Olivia P Matshabane, Ambroise Wonkam, Mogomotsi Matshaba, Jantina de Vries

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引用次数: 7

Abstract

The feedback of individual results of genomics research is an ethical issue. However, which genetic results African participants would like to receive and why, remains unclear. A qualitative study was conducted to collect data from 44 adolescents and 49 parents/caregivers of adolescents enrolled in a genomic study in Botswana. Almost all the participants wanted to receive genetic results. Parents and caregivers wanted to receive results across all categories of genetic conditions discussed in the study, while adolescents were reluctant to receive results for severe, non-preventable, and unactionable conditions. Participants expressed different reasons for wanting feedback of results, including for awareness, improving lifestyle, accepting one' situation, and preparing for the future. Our findings also reveal that participants' context, relations, and empowerment are important to consider in interpreting their preferences for feedback of results.

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HIV-TB基因组研究中个体基因研究结果反馈的参与者偏好和原因:来自博茨瓦纳的案例研究

个体基因组研究结果的反馈是一个伦理问题。然而，非洲参与者想要得到什么样的基因结果以及为什么这样做，目前还不清楚。一项定性研究收集了在博茨瓦纳参加基因组研究的44名青少年和49名青少年父母/照顾者的数据。几乎所有的参与者都希望得到基因结果。父母和看护人希望收到研究中讨论的所有遗传条件的结果，而青少年不愿意收到严重的、不可预防的和不可操作的条件的结果。参与者表达了希望得到结果反馈的不同原因，包括提高意识、改善生活方式、接受现状和为未来做准备。我们的研究结果还表明，在解释参与者对结果反馈的偏好时，他们的背景、关系和授权都是重要的考虑因素。

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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.