谁为我代言？解决涉及寄养青年的最低风险研究中知情同意实践的差异问题。
Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth.
作者信息
Greiner Mary V, Beal Sarah J, Allen Antonio, Patel Vikash, Meinzen-Derr Jareen, Antommaria Armand H Matheny
机构信息
University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center.
Cincinnati Children's Hospital Medical Center.
出版信息
J Health Dispar Res Pract. 2018 Winter;11(4):111-131.
BACKGROUND
Youth in protective custody (e.g.. foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not in custody. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements.
METHODS
We conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted.
RESULTS
Forty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth's assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent.
CONCLUSIONS
There is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth's interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth.
背景
与未被监护的青少年相比，处于保护性监护（如寄养）中的青少年身心健康状况较差的风险更高。这些差异可能部分归因于对该人群缺乏研究，从而无法为医疗保健提供基于证据的建议。导致这种研究不足的一个潜在因素是在该人群中进行实证研究时难以获得知情同意。本研究的目的是描述在针对寄养青少年的最低风险研究中获取知情同意的方法，并为未来的要求提供建议。
方法
我们对文献进行了系统回顾，以描述已发表的涉及寄养青少年的最低风险研究中的知情同意方法。我们检索了PubMed、CINAHL、PsychINFO、Embase、ERIC、Scopus和EBMR。纳入标准为：在美国进行的研究，纳入当前的寄养青少年，最低风险，经过同行评审，并以英文发表。对全文进行了审查，并提取了需要同意和赞成的个体。
结果
共确定了33项研究中的49篇出版物。研究要求0至3人同意。需要给予同意的个体包括个案工作者（16人，48%）、寄养照顾者（12人，36%）、亲生父母（7人，21%）、法官（5人，15%）和诉讼监护人（2人，6%）。29项（88%）研究要求青少年赞成。这些研究使用了14种不同的个体组合。1项（3%）研究采用了同意豁免。
结论
对于寄养青少年参与最低风险研究，没有一致的获取知情同意的方法。理想情况下，同意应涉及具有法律权威且了解青少年个人利益的个体，且不应造成负担。关于同意要求的共识可能会促进涉及寄养青少年的研究。
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