Literature DB >> 32715320

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

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.
© 2020. Springer-Verlag GmbH Germany, part of Springer Nature.

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


  12 in total

1.  Genetic dilemmas and the child's right to an open future.

Authors:  D S Davis
Journal:  Rutgers Law J       Date:  1997

2.  Informing clinical trial participants about study results.

Authors:  Ann H Partridge; Eric P Winer
Journal:  JAMA       Date:  2002-07-17       Impact factor: 56.272

3.  The ancillary-care responsibilities of medical researchers. An ethical framework for thinking about the clinical care that researchers owe their subjects.

Authors:  Henry S Richardson; Leah Belsky
Journal:  Hastings Cent Rep       Date:  2004 Jan-Feb       Impact factor: 2.683

Review 4.  Offering parents individualized feedback on the results of psychological testing conducted for research purposes with children: ethical issues and recommendations.

Authors:  Marie-josée Lefaivre; Christine T Chambers; Conrad V Fernandez
Journal:  J Clin Child Adolesc Psychol       Date:  2007 Apr-Jun

Review 5.  Prospective Longitudinal Studies of Infant Siblings of Children With Autism: Lessons Learned and Future Directions.

Authors:  Peter Szatmari; Katarzyna Chawarska; Geraldine Dawson; Stelios Georgiades; Rebecca Landa; Catherine Lord; Daniel S Messinger; Audrey Thurm; Alycia Halladay
Journal:  J Am Acad Child Adolesc Psychiatry       Date:  2016-01-08       Impact factor: 8.829

6.  The return of individual research findings in paediatric genetic research.

Authors:  Kristien Hens; Herman Nys; Jean-Jacques Cassiman; Kris Dierickx
Journal:  J Med Ethics       Date:  2010-11-08       Impact factor: 2.903

7.  Defining personal utility in genomics: A Delphi study.

Authors:  J N Kohler; E Turbitt; K L Lewis; B S Wilfond; L Jamal; H L Peay; L G Biesecker; B B Biesecker
Journal:  Clin Genet       Date:  2017-04-19       Impact factor: 4.438

8.  Psychiatric genetics researchers' views on offering return of results to individual participants.

Authors:  Kristin M Kostick; Cody Brannan; Stacey Pereira; Gabriel Lázaro-Muñoz
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2018-10-25       Impact factor: 3.568

9.  Correlates of specific childhood feeding problems.

Authors:  D Field; M Garland; K Williams
Journal:  J Paediatr Child Health       Date:  2003 May-Jun       Impact factor: 1.954

10.  Communicating the results of clinical research to participants: attitudes, practices, and future directions.

Authors:  David I Shalowitz; Franklin G Miller
Journal:  PLoS Med       Date:  2008-05-13       Impact factor: 11.069

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