Systematic Reviews
Copyright ©The Author(s) 2023. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Psychiatry. May 19, 2023; 13(5): 247-261
Published online May 19, 2023. doi: 10.5498/wjp.v13.i5.247
Knowledge, attitudes and experiences of genetic testing for autism spectrum disorders among caregivers, patients, and health providers: A systematic review
Meng Zhou, Ya-Min Zhang, Tao Li
Meng Zhou, Ya-Min Zhang, Tao Li, Department of Neurobiology, Affiliated Mental Health Center & Hangzhou Seventh People’s Hospital, Zhejiang University School of Medicine, Hangzhou 310013, Zhejiang Province, China
Ya-Min Zhang, Tao Li, Liangzhu Laboratory, MOE Frontier Science Center for Brain Science and Brain-machine Integration, State Key Laboratory of Brain-machine Intelligence, Zhejiang University, Hangzhou 310013, Zhejiang Province, China
Ya-Min Zhang, Tao Li, NHC and CAMS Key Laboratory of Medical Neurobiology, Zhejiang University, Hangzhou 310013, Zhejiang Province, China
Author contributions: Zhou M and Zhang YM contributes equally to this paper. Zhang YM and Zhou M provide the conceptualization; Zhang YM and Zhou M contributed to the methodology, literature searching, data extraction; Li T contributed to the administration resources, and supervision; Zhou M contributed to writing the original draft; Zhang YM and Li T contributed to reviewing the draft; all authors have read and approved the final manuscript.
Supported by the National Natural Science Foundation of China, No. 81920108018 (Li T and Sham P), No. 82001409 (Zhang YM), the Key R & D Program of Zhejiang, No. 2022C03096 (Li T); Project for Hangzhou Medical Disciplines of Excellence.
Conflict-of-interest statement: There is no conflicts of interest for this article.
PRISMA 2009 Checklist statement: The authors have read the PRISMA 2009 Checklist, and the manuscript was prepared and revised according to the PRISMA 2009 Checklist.
Open-Access: This article is an open-access article that was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution NonCommercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: https://creativecommons.org/Licenses/by-nc/4.0/
Corresponding author: Tao Li, MD, PhD, Academic Research, Professor, Department of Neurobiology, Affiliated Mental Health Center & Hangzhou Seventh People’s Hospital, Zhejiang University School of Medicine, No.305 Tianmushan Road, Hangzhou 310013, Zhejiang Province, China. litaozjusc@zju.edu.cn
Received: December 30, 2022
Peer-review started: December 30, 2022
First decision: March 1, 2023
Revised: March 10, 2023
Accepted: April 17, 2023
Article in press: April 17, 2023
Published online: May 19, 2023
Processing time: 140 Days and 8.8 Hours
ARTICLE HIGHLIGHTS
Research background

The popularity of genetic testing for patients with autism spectrum disorder (ASD) varies dramatically across countries. It is highly dependent on the knowledge, experiences, and attitudes toward genetic testing among caregivers of children with ASD, adolescent and adult ASD patients, and health providers. As a result, many related studies have been conducted worldwide but no systematic review has been done.

Research motivation

Getting a better knowledge of factors that are associated with the usage rate of genetic testing for patients with ASD has the potential to maximize the benefits of the test for patients.

Research objectives

To systematically review research on knowledge, experiences, and attitudes towards genetic testing among caregivers of children with ASD, adolescent and adult ASD patients, and health providers.

Research methods

We conducted a systematic review by searching the related literature without area and time limitations in both English language and Chinese language databases.

Research results

In 30 studies conducted in 9 countries,17.0% to 78.1% of caregivers/patients were aware of ASD genetic testing. However, they lacked a full understanding of it. Between 9.1% and 72.7% of caregivers in different studies were referred for genetic testing, and between 17.4% and 61.7% actually obtained genetic testing. Among caregivers, 46.7% to 95.0% without previous genetic testing experience intended to obtain it in the future, and 50.5% to 59.6% of parents who previously obtained genetic testing would recommend it to other parents. In a single study of child and adolescent psychiatrists, 54.9% of respondents had ordered ASD genetic testing for their patients in the prior 12 mo.

Research conclusions

The usage rate varied widely in different studies. It is mainly affected by the knowledge level of related parties. However, the review showed that although most caregivers are willing to learn about and use genetic testing, their current knowledge is limited.

Research perspectives

Firstly, more actions should be taken to improve the knowledge level of genetic testing among caregivers of patients with ASD. Health education through health providers, like physicians and psychiatrists, is the most effective way. Secondly, improving the knowledge of genetic testing among health providers is necessary for better utilization of genetic testing in ASD practice. Thirdly, caregivers of patients with ASD and patients themselves generally hold a positive attitude toward genetic testing. More comprehensive knowledge is needed to avoid potential misunderstandings.