Iverson Ellen, Celious Aaron, Shehane Erica, Oerke Mandy, Warren Victoria, Eastman Alexander, Kennedy Carie R, Freeman Bradley D
Children's Hospital Los Angeles, Los Angeles, CA, USA.
J Empir Res Hum Res Ethics. 2013 Jul;8(3):53-7. doi: 10.1525/jer.2013.8.3.53.
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.
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。
