McGregor Kyle A, Ott Mary A
Assistant professor in child and adolescent psychiatry and medical ethics and serves as the director of pediatric mental health ethics at NYU Langone Health.
Professor in the Department of Pediatrics in the Section of Adolescent Medicine at Indiana University School of Medicine.
Ethics Hum Res. 2019 Jul;41(4):15-22. doi: 10.1002/eahr.500023.
Adolescents are an important population to represent in biobanks. Inclusion of biospecimens from adolescents advances our understanding of the long-term consequences of pediatric disease and allows the discovery of methods to prevent adult diseases during childhood. Consent for biobanking is complex, especially when considering adolescent participation, as it brings up issues that are not present with general clinical research. The development and successful implementation of an adolescent capacity assessment tool applied specifically to biobanking can potentially provide researchers and clinicians with contextualized information on participants' understanding, appreciation, reasoning, and voluntary choice for biobanks. This tool would enhance current studies looking at the role of shared decision-making in biobanking, as well as provide a formal measurement when considering decisions around pediatric and adolescent biobanking participation. This study adapted the MacCAT-CR for use with a hypothetical adolescent biobank study and examines predictors of MacCAT-CR scores on healthy and chronically ill adolescents.
青少年是生物样本库中需要纳入的重要人群。纳入青少年的生物样本有助于我们了解儿科疾病的长期后果，并有助于发现儿童期预防成人疾病的方法。生物样本库的知情同意很复杂，尤其是考虑到青少年的参与时，因为这会引发一些一般临床研究中不存在的问题。专门应用于生物样本库的青少年能力评估工具的开发和成功实施，有可能为研究人员和临床医生提供有关参与者对生物样本库的理解、认识、推理和自愿选择的背景信息。该工具将加强目前关于共同决策在生物样本库中的作用的研究，并在考虑围绕儿科和青少年参与生物样本库的决策时提供一种正式的衡量标准。本研究对MacCAT-CR进行了改编，以用于一项假设的青少年生物样本库研究，并考察了健康和慢性病青少年的MacCAT-CR分数的预测因素。
