Medicine and Health

Parents' understanding of genome and exome sequencing for pediatric health conditions: a systematic review

J. Gereis, K. Hetherington, et al.

This systematic review by Jessica Gereis and colleagues explores how well parents understand genome and exome sequencing for pediatric health conditions. With a focus on the nuances of clinical benefits versus secondary findings and data privacy, the research demonstrates that genetic counseling can enhance parental comprehension. Discover the implications of these findings for healthcare professionals!

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Playback language: English

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Abstract

This systematic review examines parents' understanding of genome and exome sequencing (GS/ES) for pediatric health conditions. A search of four databases (2008–2021) yielded 16 studies meeting inclusion criteria. Analysis synthesized qualitative and quantitative data, organized using Ayuso et al.'s framework for informed consent. Parents demonstrated understanding of potential direct clinical benefits but showed mixed understanding of secondary findings, data privacy, and confidentiality. Genetic counseling improved understanding. The study highlights the need for healthcare professionals to assess parental understanding of GS/ES and its implications.

Publisher

European Journal of Human Genetics

Published On

Aug 23, 2022

Authors

Jessica Gereis, Kate Hetherington, Lauren Ha, Eden G. Robertson, David S. Ziegler, Kristine Barlow-Stewart, Katherine M. Tucker, Jonathan M. Marron, Claire E. Wakefield

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