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Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-6149-5498
2014 (English)In: J Law Med Ethics, Vol. 42, no 1, p. 19-27Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2014. Vol. 42, no 1, p. 19-27
Keywords [en]
Child, Confidentiality, Disclosure/*ethics, *Genetic Testing, Genomics, *Health Policy, Humans, *Patient Rights, *Personal Autonomy, Public Health
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-342713ISBN: 1748-720X (Electronic) 1073-1105 (Linking) OAI: oai:DiVA.org:uu-342713DiVA, id: diva2:1186586
Note

Borry, Pascal Shabani, Mahsa Howard, Heidi Carmen eng Research Support, Non-U.S. Gov't 2014/03/01 00:00 J Law Med Ethics. 2014 Spring;42(1):19-27. doi: 10.1111/jlme.12115.

Available from: 2018-02-28 Created: 2018-02-28 Last updated: 2018-02-28

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http://www.ncbi.nlm.nih.gov/pubmed/26767473

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