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

The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics
Pascal BorryHeidi Carmen Howard

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.

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Jul 2, 2016·Journal of Genetic Counseling·Laura HercherUNKNOWN Public Policy Committee of NSGC
Jan 18, 2018·The Journal of Medicine and Philosophy·Clair Morrissey, Rebecca L Walker
Nov 9, 2017·Harvard Review of Psychiatry·Maya Sabatello, Paul S Appelbaum
Mar 27, 2019·American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics : the Official Publication of the International Society of Psychiatric Genetics·Jana StrohmaierMarcella Rietschel
Jun 23, 2020·Gynécologie, Obstétrique, Fertilité & Sénologie·A-S NeyroudC Ravel

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