What do parents of nonverbal and minimally verbal autistic children think about genomic autism research?

Author:

Asbury KathrynORCID,Toseeb UmarORCID,Barrow Naomi

Abstract

Purpose: In Summer 2021 a genomic study of autism, Spectrum 10K, was paused due to backlash from the autistic community. This raised important questions about how the autistic and autism communities perceive genomic research. The PEAPOD study was established to address this issue among a range of sub-groups within these communities. Methods: Twenty parents of nonverbal or minimally verbal autistic children took part. Data were provided in diverse formats including online interviews, telephone interviews and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis.Results: Participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world. Participants felt excluded from the autistic and autism communities, and that the dominant voices in those communities do not represent them or their children.Conclusion: Genomic researchers need to work with the autistic and autism communities to design future work, and it is important to ensure a representative range of voices are heard.

Publisher

Center for Open Science

Cited by 2 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3