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
{"title":"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。","authors":"Dimpho Ralefala,&nbsp;Mary Kasule,&nbsp;Olivia P Matshabane,&nbsp;Ambroise Wonkam,&nbsp;Mogomotsi Matshaba,&nbsp;Jantina de Vries","doi":"10.1080/11287462.2023.2192329","DOIUrl":null,"url":null,"abstract":"<p><p>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 (<i>n</i> = 44) who previously participated in a genomics study in Botswana as well as 6 groups of parents and caregivers (<i>n</i> = 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.</p>","PeriodicalId":36835,"journal":{"name":"Global Bioethics","volume":"34 1","pages":"1-14"},"PeriodicalIF":0.0000,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10101680/pdf/","citationCount":"0","resultStr":"{\"title\":\"Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.\",\"authors\":\"Dimpho Ralefala,&nbsp;Mary Kasule,&nbsp;Olivia P Matshabane,&nbsp;Ambroise Wonkam,&nbsp;Mogomotsi Matshaba,&nbsp;Jantina de Vries\",\"doi\":\"10.1080/11287462.2023.2192329\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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 (<i>n</i> = 44) who previously participated in a genomics study in Botswana as well as 6 groups of parents and caregivers (<i>n</i> = 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.</p>\",\"PeriodicalId\":36835,\"journal\":{\"name\":\"Global Bioethics\",\"volume\":\"34 1\",\"pages\":\"1-14\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2023-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10101680/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Global Bioethics\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1080/11287462.2023.2192329\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"Arts and Humanities\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Global Bioethics","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/11287462.2023.2192329","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"Arts and Humanities","Score":null,"Total":0}
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。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
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
Can biosampling really be "non-invasive"? An examination of the socially invasive nature of physically non-invasive biosampling in urban and rural Malawi. The expressivist argument for recent policy changes regarding the provision of prenatal testing in Japan. A youth advisory group on health and health research in rural Cambodia. May Artificial Intelligence take health and sustainability on a honeymoon? Towards green technologies for multidimensional health and environmental justice. Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1