Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases
Erika Kleiderman, Bartha Maria Knoppers, Conrad V. Fernandez, Kym M. Boycott, Gail Ouellette, Durhane Wong-Rieger, Shelin Adam, Julie Richer & Denise Avard
Journal of Medical Ethics 40 (10):691-696 (2014)
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Citations of this work
The Right to Know: A Revised Standard for Reporting Incidental Findings.G. Owen Schaefer & Julian Savulescu - 2018 - Hastings Center Report 48 (2):22-32.
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‘Ethical Responsibility’ or ‘a Whole Can of Worms’: Differences in Opinion on Incidental Finding Review and Disclosure in Neuroimaging Research From Focus Group Discussions with Participants, Parents, IRB Members, Investigators, Physicians and Community Members.Caitlin Cole, Linda E. Petree, John P. Phillips, Jody M. Shoemaker, Mark Holdsworth & Deborah L. Helitzer - 2015 - Journal of Medical Ethics 41 (10):841-847.
Pathogenic Variants in the Healthy Elderly: Unique Ethical and Practical Challenges.Paul Lacaze, Joanne Ryan, Robyn Woods, Ingrid Winship & John McNeil - 2017 - Journal of Medical Ethics 43 (10):714-722.
Shared decision making in rare diseases.Franziska Krause - 2019 - Ethik in der Medizin 31 (2):131-141.
References found in this work
The Parental Investment Factor and the Child's Right to an Open Future.Dena S. Davis - 2009 - Hastings Center Report 39 (2):24-27.
Paper: The Return of Individual Research Findings in Paediatric Genetic Research.Kristien Hens, Herman Nys, Jean-Jacques Cassiman & Kris Dierickx - 2011 - Journal of Medical Ethics 37 (3):179-183.
The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish - unknown
Minors and Informed Consent in Carrier Testing: A Survey of European Clinical Geneticists.P. Borry, L. Stultiens, T. Goffin, H. Nys & K. Dierickx - 2008 - Journal of Medical Ethics 34 (5):370-374.