Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.
Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.
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DOI：
10.1177/15562646211043985
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发表时间：
2021-12
期刊：
影响因子：
--
通讯作者：
de Vries J
中科院分区：
文献类型：
--
作者：
Ralefala D;Kasule M;Matshabane OP;Wonkam A;Matshaba M;de Vries J
个体基因组学研究结果的反馈是一个伦理问题。然而，非洲参与者希望获得哪些遗传结果以及为什么，仍然不清楚。进行了一项定性研究，以收集数据，从44名青少年和49名父母/照顾者的青少年参加了基因组研究在博茨瓦纳。几乎所有的参与者都希望得到基因结果。父母和照顾者希望获得研究中讨论的所有类别遗传疾病的结果，而青少年不愿意接受严重，不可预防和不可操作的疾病的结果。参与者表达了希望获得结果反馈的不同原因，包括提高认识、改善生活方式、接受自己的处境以及为未来做准备。我们的研究结果还表明，参与者的背景，关系和授权是重要的考虑在解释他们的偏好的结果反馈。
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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DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
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影响因子：
4
作者：
Gale NK;Heath G;Cameron E;Rashid S;Redwood S
通讯作者：
Redwood S
DOI：
10.1177/1556264615599620
发表时间：
2015-10-01
影响因子：
1.3
作者：
Holm, Ingrid A.;Iles, Brittany R.;Huntington, Noelle L.
通讯作者：
Huntington, Noelle L.
影响因子：
3.5
作者：
Futter, M. J.;Heckmann, J. M.;Greenberg, L. J.
通讯作者：
Greenberg, L. J.
影响因子：
5.4
作者：
Marsh, Vicki;Kombe, Francis;Fitzpatrick, Ray;Molyneux, Sassy;Parker, Michael
通讯作者：
Parker, Michael