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

Borry, Pascal ; Shabani, Mahsa and Howard, Heidi Carmen LU (2014) In Journal of Law, Medicine & Ethics 42(1). p.19-27
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... (More)

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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Please use this url to cite or link to this publication:
author
; and
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Child, Confidentiality, Disclosure/ethics, Genetic Testing, Genomics, Health Policy, Humans, Patient Rights, Personal Autonomy, Public Health
in
Journal of Law, Medicine & Ethics
volume
42
issue
1
pages
9 pages
publisher
SAGE Publications
external identifiers
  • scopus:84926326617
  • pmid:26767473
ISSN
1073-1105
DOI
10.1111/jlme.12115
language
English
LU publication?
no
additional info
© 2014 American Society of Law, Medicine & Ethics, Inc.
id
5387d5e8-4b2a-4e38-b0cf-dfae517e4051
date added to LUP
2021-11-01 10:25:10
date last changed
2024-01-05 19:18:15
@article{5387d5e8-4b2a-4e38-b0cf-dfae517e4051,
  abstract     = {{<p>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. </p>}},
  author       = {{Borry, Pascal and Shabani, Mahsa and Howard, Heidi Carmen}},
  issn         = {{1073-1105}},
  keywords     = {{Child; Confidentiality; Disclosure/ethics; Genetic Testing; Genomics; Health Policy; Humans; Patient Rights; Personal Autonomy; Public Health}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{19--27}},
  publisher    = {{SAGE Publications}},
  series       = {{Journal of Law, Medicine & Ethics}},
  title        = {{Is There a Right Time to Know? : The Right Not to Know and Genetic Testing in Children}},
  url          = {{http://dx.doi.org/10.1111/jlme.12115}},
  doi          = {{10.1111/jlme.12115}},
  volume       = {{42}},
  year         = {{2014}},
}