Children and young people's understanding of inherited conditions and their attitudes towards genetic testing: A systematic review

31Citations
Citations of this article
68Readers
Mendeley users who have this article in their library.
Get full text

Abstract

Children and young people are increasingly likely to receive information regarding inherited health risks relevant to their genetic relatives and themselves. We reviewed the literature to determine what children and young people (21 years and younger) understand about inherited conditions and their attitudes towards genetic testing. We screened 1815 abstracts to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years (1498 children or young people at general population-level risk from 9 studies, 313 affected/at risk from 15 studies). Children and young people at general population-level risk demonstrated a basic understanding that disease predisposition can be inherited within families. Those affected by or at risk of genetic conditions inferred their genetic status from observable, relational characteristics within their family and the results of personal genetic testing if it had occurred, but some misunderstandings of important genetic concepts were evident. Children and young people expressed interest in and a willingness to undertake personal genetic testing, but also articulated concerns about the limitations and risks of testing. Paediatric patients require developmentally-sensitive genetic counselling and support in navigating the unique landscape of their condition.

Cite

CITATION STYLE

APA

McGill, B. C., Wakefield, C. E., Vetsch, J., Barlow-Stewart, K., Kasparian, N. A., Patenaude, A. F., … Tucker, K. M. (2019, January 1). Children and young people’s understanding of inherited conditions and their attitudes towards genetic testing: A systematic review. Clinical Genetics. Blackwell Publishing Ltd. https://doi.org/10.1111/cge.13253

Register to see more suggestions

Mendeley helps you to discover research relevant for your work.

Already have an account?

Save time finding and organizing research with Mendeley

Sign up for free