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Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject
Sarah Scollon, Katie Bergstrom, Laurence B. McCullough, Amy L. McGuire, Stephanie Gutierrez, Robin Kerstein, D. Williams Parsons & Sharon E. Plon
Journal of Law, Medicine and Ethics 43 (3):529-537 (2015)
Abstract
The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settingsAuthor's Profile
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References found in this work
Addressing the Ethical Challenges in Genetic Testing and Sequencing of Children.Ellen Wright Clayton, Laurence B. McCullough, Leslie G. Biesecker, Steven Joffe, Lainie Friedman Ross, Susan M. Wolf & For the Clinical Sequencing Exploratory Research Group - 2014 - American Journal of Bioethics 14 (3):3-9.
Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
Informed consent as an ethical requirement in clinical trials: an old, but still unresolved issue. An observational study to evaluate patient's informed consent comprehension.Virginia Sanchini, Michele Reni, Giliola Calori, Elisabetta Riva & Massimo Reichlin - 2014 - Journal of Medical Ethics 40 (4):269-275.
Pediatric Research and the Return of Individual Research Results.Denise Avard, Karine Sénécal, Parvaz Madadi & Daniel Sinnett - 2011 - Journal of Law, Medicine and Ethics 39 (4):593-604.
The best interests of the child and the return of results in genetic research: international comparative perspectives.Ma’N. H. Zawati, David Parry & Bartha Maria Knoppers - 2014 - BMC Medical Ethics 15 (1):72.
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