Is there a right time to know ? the right not to know and genetic testing in children

Item Type

Language

English

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.

Publication Year

2014

Publication Date

2014

License

ISSN

1748-720X

Physical Description

vol. 42, n. 1, pp. p. 19-27

Short Title

Is there a right time to know ?

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Is there a right time to know ? the right not to know and genetic testing in children, dans Science & Ignorance, consulté le 21 Novembre 2024, https://ignorancestudies.inist.fr/s/science-ignorance/item/5346

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