Ethics of returning children ’s individual research findings: from principles to practice

AbstractLittle 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 f orm 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 developm ent 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 con cepts 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 theancillary care responsibilities of the researcher,non-maleficence and beneficence, theright to an open future of the child, and theavoidance 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 childr...
Source: European Child and Adolescent Psychiatry - Category: Psychiatry Source Type: research