Barriers, motivators and strategies to increase participation in genetic research among Asian and Black families of autistic individuals.

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-10-01 Epub Date: 2024-08-13 DOI:10.1007/s12687-024-00724-9
Maira Tafolla, Raquel Amador, Motunrayo J Oyeyemi, Zach Algaze, Juhi Pandey, Robin P Goin-Kochel, Dustin E Sarver, Amanda Gulsrud
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Abstract

Genetic research can help advance our knowledge of autism and positively impact the progress of care for individuals with autism. Asian American and Pacific Islander (AAPI) and Black participants remain significantly underrepresented in genetic research in autism in the United States, including nationwide, multisite, genetic consortiums like Simons Foundation Powering Autism Research for Knowledge (SPARK). Few studies have explored the unique motivators and barriers that influence participation in genetics research across underrepresented groups with autism and strategies to increase participation. Therefore, the aim of this study was to understand the perspectives of AAPI and Black parents of individuals with autism about participating in genetic research, specifically motivators (e.g., desire to know more about the relationship between autism and genetics) and/or barriers (e.g., mistrust of research staff) that may impact their decision to participate in genetic research. Using a mixed-methods approach, we collected surveys (n = 134) across the United States and conducted three focus groups with parents of individuals with autism (n = 16) who identified as AAPI and Black from two large metropolitan cities. No significant differences were observed in the survey data but findings from the focus groups elucidate shared motivators for participation (e.g., to help advance the autism field for future generations) and nuanced differences in barriers that influence Black and AAPI parents' decision to participate (e.g., different beliefs about the source of autism). Practical suggestions to improve outreach and study engagement in genetic research in autism were identified and discussed.

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提高亚裔和黑人自闭症患者家庭参与基因研究的障碍、动力和策略。
基因研究有助于增进我们对自闭症的了解,并对自闭症患者的治疗进展产生积极影响。在美国,亚裔美国人和太平洋岛民(AAPI)以及黑人参与者参与自闭症遗传学研究的人数仍然严重不足,包括像西蒙斯基金会推动自闭症知识研究(SPARK)这样的全国性、多地点遗传学联盟。很少有研究探讨影响自闭症患者参与遗传学研究的独特动机和障碍,以及提高参与率的策略。因此,本研究旨在了解亚裔美国人和黑人自闭症患者家长对参与遗传学研究的看法,特别是可能影响他们决定参与遗传学研究的动机(如希望更多地了解自闭症与遗传学之间的关系)和/或障碍(如对研究人员的不信任)。我们采用混合方法,在美国各地收集了调查问卷(n = 134),并与两个大都市中自闭症患者的父母(n = 16)(他们被认定为亚裔美国人和黑人)进行了三次焦点小组讨论。调查数据未发现明显差异,但焦点小组的研究结果阐明了共同的参与动机(例如,帮助后代推动自闭症领域的发展),以及影响黑人和亚裔美国人家长决定参与的障碍的细微差别(例如,对自闭症来源的不同看法)。会议确定并讨论了改进自闭症基因研究的外联和研究参与的实用建议。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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