Pediatric Research and the Return of Individual Research Results
Journal of Law, Medicine and Ethics 39 (4):593-604 (2011)
| Abstract | The return of individual research results to participants raises many socio-ethical issues and is even more challenging when the participant is a child. The objective of this article is to present an overview of the few ethical guidelines and relevant literature addressing the return of individual results in pediatric research. By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework | |||||||||
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Anne Marie Tassé (2011). The Return of Results of Deceased Research Participants. Journal of Law, Medicine and Ethics 39 (4):621-630.
Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine and Ethics 39 (4):583-592.
Ma'N. H. Zawati & Amélie Rioux (2011). Biobanks and the Return of Research Results: Out with the Old and In with the New? Journal of Law, Medicine and Ethics 39 (4):614-620.
Bartha Maria Knoppers & Amy Dam (2011). Return of Results: Towards a Lexicon? Journal of Law, Medicine and Ethics 39 (4):577-582.
Susan E. Wallace (2011). The Needle in the Haystack: International Consortia and the Return of Individual Research Results. Journal of Law, Medicine and Ethics 39 (4):631-639.
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson (2008). Public Expectations for Return of Results From Large-Cohort Genetic Research. American Journal of Bioethics 8 (11):36 – 43.
Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers (2013). Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. BMC Medical Ethics 14 (1):1-10.
Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. American Journal of Bioethics 12 (10):1-8.
Jérémy Vanhelst, Ludovic Hardy, Dina Bert, Stéphane Duhem, Stéphanie Coopman, Christian Libersa, Dominique Deplanque, Frédéric Gottrand & Laurent Béghin (2013). Effect of Child Health Status on Parents' Allowing Children to Participate in Pediatric Research. BMC Medical Ethics 14 (1):7.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine and Ethics 39 (4):605-613.
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