与会者对个别遗传研究结果反馈的实际考虑的看法:来自博茨瓦纳的案例研究。

Q1 Arts and Humanities Global Bioethics Pub Date : 2023-01-01 DOI:10.1080/11287462.2023.2192329
Dimpho Ralefala, Mary Kasule, Olivia P Matshabane, Ambroise Wonkam, Mogomotsi Matshaba, Jantina de Vries
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引用次数: 0

摘要

关于基因组学研究的个人结果反馈的讨论的关键是关于这些结果应该如何反馈,由谁以及何时反馈的实际问题。然而,在低收入和中等收入国家(LMICs)的背景下,特别是在非洲,几乎没有研究这些实际考虑的个人遗传结果反馈的工作。因此,我们与6组曾参与博茨瓦纳基因组学研究的青少年(n = 44)以及参与同一研究的6组儿童的父母和看护人(n = 49)进行了审慎的焦点小组讨论。我们还对6名青少年和6名家长或照顾者进行了深度访谈。我们的研究结果表明,青少年和父母都更愿意亲自收到他们的个人基因结果,青少年更喜欢研究人员提供反馈,而父母更喜欢与研究相关的医生。青少年和家长都进一步表示,反馈应得到咨询的支持,但在反馈的时间上存在分歧,从尽快反馈到在项目结束时反馈不等。总之,关于结果反馈的实用性的决定应考虑到参与者的情况和考虑参与者的偏好。
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Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.

Key to discussions around feedback of individual results from genomics research are practical questions on how such results should be fed back, by who and when. However, there has been virtually no work investigating these practical considerations for feedback of individual genetic results in the context of low-and middle-income countries (LMICs), especially in Africa. Consequently, we conducted deliberative focus group discussions with 6 groups of adolescents (n = 44) who previously participated in a genomics study in Botswana as well as 6 groups of parents and caregivers (n = 49) of children who participated in the same study. We also conducted in-depth interviews with 6 adolescents and 6 parents or caregivers. Our findings revealed that both adolescents and parents would prefer to receive their individual genetic results in person, with adolescents preferring researchers to provide feedback, while parents preferred doctors who are associated with the study. Both adolescents and parents further expressed that feedback should be supported by counselling but differed on the timing of feedback, with preferences ranging from feedback as quickly as possible to feedback at project end. In conclusion, decisions on practicalities for feedback of results should be done in account of participants' context and considerations of participants' preferences.

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来源期刊
Global Bioethics
Global Bioethics Arts and Humanities-Philosophy
CiteScore
5.00
自引率
0.00%
发文量
12
审稿时长
37 weeks
期刊最新文献
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