Is There a Right Time to Know? : The Right Not to Know and Genetic Testing in Children
(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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- author
- Borry, Pascal ; Shabani, Mahsa and Howard, Heidi Carmen LU
- publishing date
- 2014
- 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
- 2024-06-15 20:23:30
@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}}, }