患者对退出式基因组生物样本库的知晓与认可。
Patient awareness and approval for an opt-out genomic biorepository.
作者信息
Brothers Kyle B, Westbrook Mathew J, Wright M Frances, Myers John A, Morrison Daniel R, Madison Jennifer L, Pulley Jill M, Clayton Ellen Wright
机构信息
Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Department of Pediatrics, Vanderbilt University & the Monroe Carell Jr.Children's Hospital at Vanderbilt, Nashville, TN, USA ; Kosair Charites Pediatric Clinical, Research Unit, Department of Pediatrics, University of Louisville, School of Medicine, Louisville, KY, USA.
Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA.
出版信息
Per Med. 2013 Jun;10(4). doi: 10.2217/pme.13.34.
AIM
In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository.
MATERIALS & METHODS: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA).
RESULTS
32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%.
CONCLUSION
These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.
目的
在本研究中，我们试图评估患者对退出式生物样本库的认知和看法。
材料与方法
我们对在美国田纳西州范德比尔特大学医学中心接受临床护理时进行抽血的成年患者及儿科患者的家长进行了出院访谈。
结果
所有患者及儿科患者的家长中，32.9%报告听说过退出式生物样本库，而基于简短描述，92.4%的人赞成这项研究工作。在研究期间，成年患者中知晓剩余血液可用于研究的比例从34.3%增至50.0%。
结论
这些发现将为正在进行的关于退出式和加入式方法作为书面知情同意之外纳入生物样本库替代方案的适用性评估提供参考。
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