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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) Copy BIBT_EX

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Biomedical Ethics in Applied Ethics

Genetic Testing in Applied Ethics

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10.1136/medethics-2013-101648

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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.

Incidental findings of uncertain significance: To know or not to know - that is not the question.Bjørn Hofmann - 2016 - BMC Medical Ethics 17 (1):1-9.

Parents and Provider Perspectives on the Return of Genomic Findings for Cleft Families in Africa.Abimbola M. Oladayo, Sydney Prochaska, Tamara Busch, Wasiu L. Adeyemo, Lord J. J. Gowans, Mekonen Eshete, Waheed Awotoye, Veronica Sule, Azeez Alade, Adebowale A. Adeyemo, Peter A. Mossey, Anya Prince, Jeffrey C. Murray & Azeez Butali - forthcoming - AJOB Empirical Bioethics.

‘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.

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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.

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