Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, Maryland, USA.
Clinical Research and Quality Improvement, Kennedy Krieger Institute, Baltimore, Maryland, USA.
AJOB Empir Bioeth. 2021 Apr-Jun;12(2):92-100. doi: 10.1080/23294515.2020.1836066. Epub 2020 Oct 26.
Data is needed to provide insight into the issue of preference around consent for use of pediatric clinical data for research. This study evaluated caregivers' preferences concerning use of their child's clinical information.
Caregivers of children (n = 101; response rate 81.5% of n = 124) presenting for psychological evaluation at an urban medical center viewed a video regarding how the information contained in their child's medical record could be used for research.
An anonymous survey following the video indicated that: 1) >90% of caregivers felt comfortable with their child's information being used; 2) >90% of caregivers felt their child's privacy would be adequately protected; 3) 98% of caregivers reported themselves to be as or more likely to return to the institution after viewing the video; 4) 60% of caregivers felt no additional consent procedures beyond viewing the video were needed, while 20% preferred an opt-out and 20% preferred a traditional consent procedure. Caregiver demographic variables were largely unrelated to consent preferences.
Overall, caregivers reported strong support for use of their child's clinical data for research purposes.
需要数据来深入了解关于儿童临床数据用于研究的同意偏好问题。本研究评估了照顾者对使用其子女临床信息的偏好。
在城市医疗中心进行心理评估的儿童（n=101；对 n=124 的回应率为 81.5%）的照顾者观看了一段有关其子女病历中包含的信息如何用于研究的视频。
观看视频后的匿名调查显示：1）超过 90%的照顾者对其子女的信息被使用感到放心；2）超过 90%的照顾者认为其子女的隐私将得到充分保护；3）98%的照顾者表示在观看视频后更有可能或更有可能返回该机构；4）60%的照顾者认为无需进行超出观看视频之外的额外同意程序，而 20%的人更喜欢选择退出，20%的人更喜欢传统的同意程序。照顾者的人口统计学变量与同意偏好关系不大。
总体而言，照顾者报告强烈支持将其子女的临床数据用于研究目的。
