Literature DB >> 26767473

Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children.

Pascal Borry1, Mahsa Shabani2, Heidi Carmen Howard3.   

Abstract

The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their "right not to know" should be respected as much as possible. Testing a minor early in life eliminates the possibility for the minor to make use of his or her "right not to know." The article discusses the theoretical underpinnings of the right not know, analyzes reasons why various direct-to-consumer companies process samples from minors, and discusses the right not to know in relation to common complex disorders in a pediatric population.
© 2014 American Society of Law, Medicine & Ethics, Inc.

Entities:  

Mesh:

Year:  2014        PMID: 26767473     DOI: 10.1111/jlme.12115

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  7 in total

1.  Preserving children's fertility: two tales about children's right to an open future and the margins of parental obligations.

Authors:  Daniela Cutas; Kristien Hens
Journal:  Med Health Care Philos       Date:  2015-05

2.  Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors.

Authors:  Laura Hercher; Wendy R Uhlmann; Erin P Hoffman; Shanna Gustafson; Kelly M Chen
Journal:  J Genet Couns       Date:  2016-07-01       Impact factor: 2.537

3.  The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.

Authors:  Clair Morrissey; Rebecca L Walker
Journal:  J Med Philos       Date:  2018-01-12

Review 4.  Behavioral Genetics in Criminal and Civil Courts.

Authors:  Maya Sabatello; Paul S Appelbaum
Journal:  Harv Rev Psychiatry       Date:  2017 Nov/Dec       Impact factor: 3.732

5.  Incidental findings of uncertain significance: To know or not to know--that is not the question.

Authors:  Bjørn Hofmann
Journal:  BMC Med Ethics       Date:  2016-02-13       Impact factor: 2.652

6.  Attitudes toward the right to autonomous decision-making in psychiatric genetic testing: Controversial and context-dependent.

Authors:  Jana Strohmaier; Stephanie H Witt; Josef Frank; Noemi Lemme; Laura Flatau; Fabian Streit; Jerome C Foo; Markus Reitt; Dan Rujescu; Thomas G Schulze; Dirk Lanzerath; Franciska Illes; Franziska Degenhardt; Marcella Rietschel
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2019-03-26       Impact factor: 3.568

7.  A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing.

Authors:  Hazar Haidar; Jessica Le Clerc-Blain; Meredith Vanstone; Anne-Marie Laberge; Gilles Bibeau; Labib Ghulmiyyah; Vardit Ravitsky
Journal:  BMC Pregnancy Childbirth       Date:  2021-01-13       Impact factor: 3.007

  7 in total

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