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

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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 theancillary care responsibilitiesof 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 children's individual research findings to cases where findings are consideredclinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.
Keywords
PARTICIPANTS, ATTITUDES, FEEDBACK, PARENTS, CARE, Ethics, Individual research findings, Feedback, Autism

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MLA
Vanaken, Gert-Jan, et al. “Ethics of Returning Children’s Individual Research Findings : From Principles to Practice.” EUROPEAN CHILD & ADOLESCENT PSYCHIATRY, 2021, doi:10.1007/s00787-020-01606-4.
APA
Vanaken, G.-J., Noens, I., Roeyers, H., van Esch, L., Warreyn, P., Steyaert, J., & Hens, K. (2021). Ethics of returning children’s individual research findings : from principles to practice. EUROPEAN CHILD & ADOLESCENT PSYCHIATRY. https://doi.org/10.1007/s00787-020-01606-4
Chicago author-date
Vanaken, Gert-Jan, Ilse Noens, Herbert Roeyers, Lotte van Esch, Petra Warreyn, Jean Steyaert, and Kristien Hens. 2021. “Ethics of Returning Children’s Individual Research Findings : From Principles to Practice.” EUROPEAN CHILD & ADOLESCENT PSYCHIATRY. https://doi.org/10.1007/s00787-020-01606-4.
Chicago author-date (all authors)
Vanaken, Gert-Jan, Ilse Noens, Herbert Roeyers, Lotte van Esch, Petra Warreyn, Jean Steyaert, and Kristien Hens. 2021. “Ethics of Returning Children’s Individual Research Findings : From Principles to Practice.” EUROPEAN CHILD & ADOLESCENT PSYCHIATRY. doi:10.1007/s00787-020-01606-4.
Vancouver
1.
Vanaken G-J, Noens I, Roeyers H, van Esch L, Warreyn P, Steyaert J, et al. Ethics of returning children’s individual research findings : from principles to practice. EUROPEAN CHILD & ADOLESCENT PSYCHIATRY. 2021;
IEEE
[1]
G.-J. Vanaken et al., “Ethics of returning children’s individual research findings : from principles to practice,” EUROPEAN CHILD & ADOLESCENT PSYCHIATRY, 2021.
@article{8680458,
  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 theancillary care responsibilitiesof 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 children's individual research findings to cases where findings are consideredclinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.}},
  author       = {{Vanaken, Gert-Jan and Noens, Ilse and Roeyers, Herbert and van Esch, Lotte and Warreyn, Petra and Steyaert, Jean and Hens, Kristien}},
  issn         = {{1018-8827}},
  journal      = {{EUROPEAN CHILD & ADOLESCENT PSYCHIATRY}},
  keywords     = {{PARTICIPANTS,ATTITUDES,FEEDBACK,PARENTS,CARE,Ethics,Individual research findings,Feedback,Autism}},
  language     = {{eng}},
  pages        = {{9}},
  title        = {{Ethics of returning children's individual research findings : from principles to practice}},
  url          = {{http://dx.doi.org/10.1007/s00787-020-01606-4}},
  year         = {{2021}},
}

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