The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.
The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository.
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DOI：
10.1038/gim.2011.25
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发表时间：
2012-03
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我们对儿科基因组研究中家长对个人研究结果 (IRR) 返还的态度知之甚少。本研究的目的是了解将孩子登记在将返回 IRR 的基因组存储库中的父母的看法。我们与参加 Gene Partnership (GP)（一个提供返还 IRR 的基因组研究库）的发育障碍儿童的家长进行了焦点小组讨论，以了解他们对 GP 的理解、让孩子参加的动机以及对 IRR 返还的期望。家长希望收到 IRR，以帮助他们更好地了解孩子的状况。他们知道这种结果不太可能出现，但希望他们的孩子参加全科医生能够为科学知识做出贡献。大多数父母出于个人利益的考虑，希望获得有关其孩子的所有 IRR，即使是患有严重且无法治疗的疾病。家长更喜欢以电子方式传递结果，并希望指定他们对将收到哪些信息的偏好。对于研究人员来说，了解参与者对注册提供披露儿童 IRR 的研究库的期望非常重要，以便在同意过程中有效地向父母传达其影响。
Little is known about parental attitudes toward return of individual research results (IRRs) in pediatric genomic research. The aim of this study was to understand the views of the parents who enrolled their children in a genomic repository in which IRRs will be returned. We conducted focus groups with parents of children with developmental disorders enrolled in the Gene Partnership (GP), a genomic research repository that offers to return IRRs, to learn about their understanding of the GP, motivations for enrolling their children, and expectations regarding the return of IRRs. Parents hoped to receive IRRs that would help them better understand their children’s condition(s). They understood that this outcome was unlikely, but hoped that their children’s participation in the GP would contribute to scientific knowledge. Most parents wanted to receive all IRRs about their child, even for diseases that were severe and untreatable, citing reasons of personal utility. Parents preferred electronic delivery of the results and wanted to designate their preferences regarding what information they would receive. It is important for researchers to understand participant expectations in enrolling in a research repository that offers to disclose children’s IRRs in order to effectively communicate the implications to parents during the consenting process.