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

Shiri Shkedi-Rafid, Angela Fenwick, Sandi Dheensa, Anneke M Lucassen

Research output: Contribution to journalArticle (Academic Journal)peer-review

13 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1281-5
Number of pages5
JournalEuropean Journal of Human Genetics
Volume23
Issue number10
DOIs
Publication statusPublished - Oct 2015

Keywords

  • Adolescent
  • Adult
  • Ethnic Groups/psychology
  • Female
  • Genetic Counseling/psychology
  • Genetic Predisposition to Disease/genetics
  • Genetic Testing/methods
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Male
  • Middle Aged
  • Parents/psychology
  • Young Adult

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