Tabor Holly K, Brazg Tracy, Crouch Julia, Namey Emily E, Fullerton Stephanie M, Beskow Laura M, Wilfond Benjamin S
Seattle Children's Research Institute University of Washington, Treuman Katz Center for Pediatric Bioethics, 1900 Ninth Ave., Seattle, WA 98101, USA.
J Empir Res Hum Res Ethics. 2011 Dec;6(4):41-52. doi: 10.1525/jer.2011.6.4.41.
As genetic research is increasingly conducted in children, it is important to understand how parents make decisions about enrolling their children and what they think about receiving their children's genetic research results. We conducted semi-structured phone interviews with 23 parents of children enrolled in genetic studies of autism or diabetes. Qualitative thematic analysis focused on two important components of genetic research and genotype-driven recruitment: participation in genetic research and return of results. Our findings suggest that parents' preferences and perspectives may be specific to their child's disease and the needs of the family as a whole. Assessing the expectations of target research populations will be beneficial for developing best practices for pediatric genetic research, return of results, and genotype-driven recruitment.
随着针对儿童的基因研究越来越多，了解父母如何决定让孩子参与研究以及他们对获取孩子的基因研究结果有何看法变得很重要。我们对23位让孩子参与自闭症或糖尿病基因研究的家长进行了半结构化电话访谈。定性主题分析聚焦于基因研究和基因型驱动招募的两个重要组成部分：参与基因研究和结果反馈。我们的研究结果表明，父母的偏好和观点可能因孩子的疾病以及整个家庭的需求而异。评估目标研究人群的期望将有助于制定儿科基因研究、结果反馈和基因型驱动招募的最佳实践。
