Should Feedback of Individual Results be Integrated into the Consent Process in African Genomics? Participants' Views from an HIV-TB Genomics Research Project in Botswana.
Should Feedback of Individual Results be Integrated into the Consent Process in African Genomics? Participants' Views from an HIV-TB Genomics Research Project in Botswana.
复制标题
个体结果的反馈是否应该纳入非洲基因组学的同意过程中？
DOI：
10.1080/23294515.2021.1941414
复制
发表时间：
2022
影响因子：
--
通讯作者：
deVries,Jantina
中科院分区：
文献类型：
--
作者：
Ralefala,Dimpho;Kasule,Mary;Wonkam,Ambroise;Matshaba,Mogomotsi;deVries,Jantina
BackgroundWhile知情同意是一个关键组成部分，考虑是否个人基因组研究结果可以或应该被反馈给研究参与者，鲜为人知的是，非洲研究参与者的意见，其role.MethodsWe进行了定性研究，探讨意见的青少年和父母或照顾者对知情同意的反馈，从基因组学研究项目在博茨瓦纳的个人结果。我们进行了24个审议焦点小组讨论与93名参与者（44名青少年和49名家长或照顾者）和12个深入访谈（6名青少年和6名家长）。ResultsOur研究结果显示，大多数参与者都希望被告知的可能性，发现个人的遗传结果在同意过程中，并同意在招生过程中获得反馈。他们进一步表示，如果事先没有获得对反馈的同意，那么在发现挽救生命的遗传信息时，应再次与参与者联系。与会者强调，研究人员必须确保与会者在充分知情的情况下就结果反馈作出决定。自主权，透明度和沟通被确定为关键价值观，坚持在consent process.ConclusionIn结论，获得参与者的同意反馈的结果是很重要的，以确保他们的权利和福祉在研究中得到保护。这对于在参与者和研究人员之间建立信任关系至关重要。
BackgroundWhilst informed consent is a key component of considering whether individual genomic research results could or should be fed back to research participants, little is known about the views of African research participants on its role.MethodsWe carried out a qualitative study to explore views of adolescents and parents or caregivers regarding informed consent for feedback of individual results from a genomics research project in Botswana. We conducted 24 deliberative focus group discussions with 93 participants (44 adolescents and 49 parents or caregivers) and 12 in-depth interviews (6 adolescents and 6 parents).ResultsOur findings revealed that most participants would like to be informed about the possibility of discovering individual genetic results during the consent process and that consent be obtained for feedback during the enrollment process. They further expressed that in cases where prior consent to feedback was not obtained, then participants should be re-contacted where life-saving genetic information is discovered. Participants emphasized the need for researchers to ensure that participants’ decisions regarding feedback of results are well-informed. Autonomy, transparency, and communication were identified as key values to uphold during the consent process.ConclusionIn conclusion, obtaining participants’ consent for feedback of results is important to ensure that their rights and wellbeing are protected in research. This is critical in building trust relationships between participants and researchers.