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Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice

Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice
Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice
This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.European Journal of Human Genetics advance online publication, 5 November 2014; doi:10.1038/ejhg.2014.221.
1018-4813
1281–1285
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Shkedi-Rafid, Shiri, Fenwick, Angela, Dheensa, Sandi and Lucassen, Anneke M. (2014) Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice. European Journal of Human Genetics, 23 (10), 1281–1285. (doi:10.1038/ejhg.2014.221). (PMID:25370041)

Record type: Article

Abstract

This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.European Journal of Human Genetics advance online publication, 5 November 2014; doi:10.1038/ejhg.2014.221.

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Accepted/In Press date: 1 September 2014
e-pub ahead of print date: 5 November 2014
Published date: 5 November 2014
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 371640
URI: http://eprints.soton.ac.uk/id/eprint/371640
ISSN: 1018-4813
PURE UUID: 946a5071-487e-4495-b542-92f4138d1f49
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 10 Nov 2014 15:30
Last modified: 18 Feb 2021 16:58

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Contributors

Author: Shiri Shkedi-Rafid
Author: Angela Fenwick
Author: Sandi Dheensa

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