Parenting and Special Education Research Unit, Faculty of Educational Sciences, KU Leuven, Leopold Vanderkelenstraat 32, 3000, Leuven, Belgium.
Leuven Autism Research (LAuRes), Leuven, Belgium.
Eur Child Adolesc Psychiatry. 2021 Aug;30(8):1163-1171. doi: 10.1007/s00787-020-01606-4. Epub 2020 Jul 26.
Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.
针对行为科学研究人员，尤其是与遗传研究相比，关于如何向儿童返还个体研究结果，目前仅有少量的伦理学建议。有传闻证据表明，由于父母通常对孩子的个体研究结果感兴趣，因此研究人员倾向于将这些信息作为参与研究的一种补偿形式提供。尽管意图良好，但这些做法可能会对儿童造成潜在的有害后果。在参与一项纵向婴儿发育研究（即跟踪自闭症高风险婴儿[TIARA]）时，我们遇到了这些困难，也意识到了在这个主题上可用的指导意见很少。首先，我们回顾了当前的伦理建议，并根据 TIARA 研究讨论了它们的局限性。其次，我们将通过确定并应用手头的相关生物伦理原则和概念来建议修订这些建议。第三，作为实际实施的一个例子，我们介绍了为 TIARA 研究采用的“返还研究结果”政策。我们所涉及的原则和概念是研究人员的辅助护理责任、不伤害和有益、儿童未来的开放性权利以及避免治疗误解。最终，我们提出了在 TIARA 研究中实施的具体返还研究结果政策。在这里，我们建议将儿童个体研究结果的系统返还仅限于那些被认为对孩子具有临床意义和可操作性的情况。我们讨论了在行为科学领域设计和进行儿童研究的更广泛影响。
