| Literature DB >> 32715320 |
Gert-Jan Vanaken1,2,3, Ilse Noens4,5, Herbert Roeyers6, Lotte van Esch4,5, Petra Warreyn6, Jean Steyaert5,7, Kristien Hens5,8,9.
Abstract
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.Entities:
Keywords: Autism; Ethics; Feedback; Individual research findings
Year: 2020 PMID: 32715320 DOI: 10.1007/s00787-020-01606-4
Source DB: PubMed Journal: Eur Child Adolesc Psychiatry ISSN: 1018-8827 Impact factor: 4.785