涉及基因组数据收集的危重症研究：危重症患者替代决策者基因组知识水平较低所带来的难题。
Critical illness research involving collection of genomic data: the conundrum posed by low levels of genomic literacy among surrogate decision makers for critically ill patients.
作者信息
Iverson Ellen, Celious Aaron, Shehane Erica, Oerke Mandy, Warren Victoria, Eastman Alexander, Kennedy Carie R, Freeman Bradley D
机构信息
Children's Hospital Los Angeles, Los Angeles, CA, USA.
出版信息
J Empir Res Hum Res Ethics. 2013 Jul;8(3):53-7. doi: 10.1525/jer.2013.8.3.53.
Abstract
Critical illness clinical trials that entail genomic data collection pose unique challenges. In this qualitative study, we found that surrogate decision makers (SDMs) for critically ill individuals, such as those who would be approached for study participation, appeared to have a limited grasp of genomic principles. We argue that low levels of genomic literacy should neither preclude nor be in conflict with the conduct of ethically rigorous clinical trials.
摘要
涉及基因组数据收集的危重症临床试验带来了独特的挑战。在这项定性研究中，我们发现危重症患者的替代决策者（SDM），例如那些可能被邀请参与研究的人，似乎对基因组学原理的理解有限。我们认为，低水平的基因组知识既不应妨碍符合伦理规范的临床试验的开展，也不应与之冲突。
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