Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature

被引:96
作者
Cascio, M. A. [1 ,2 ,3 ]
Weiss, J. A. [4 ]
Racine, E. [1 ,2 ,5 ]
机构
[1] Inst Rech Clin Montreal, 110 Ave Pins Ouest,Salle 1535, Montreal, PQ H2W 1R7, Canada
[2] McGill Univ, Montreal, PQ, Canada
[3] Cent Michigan Univ, Coll Med, 1280 E Campus Dr, Mt Pleasant, MI 48859 USA
[4] York Univ, 230 Behav Sci Bldg,4700 Keele St, Toronto, ON M3J 1P3, Canada
[5] Univ Montreal, Montreal, PQ, Canada
关键词
Person-oriented research ethics; Intersectionality; Demographics; Lived experience; Stereotypes; Inclusion; SPECTRUM DISORDERS; INTELLECTUAL DISABILITY; QUALITATIVE RESEARCH; OBTAINING CONSENT; GENETIC RESEARCH; CLINICAL-TRIALS; YOUNG-PEOPLE; CHILDREN; DISPARITIES; HEALTH;
D O I
10.1007/s40489-020-00204-z
中图分类号
B844 [发展心理学(人类心理学)];
学科分类号
040202 ;
摘要
Growth in autism research necessitates corresponding attention to autism research ethics, including ethical and meaningful inclusion of diverse participants. This paper presents the results of a review of research ethics literature, strengthened by consultation with a task force involving autism professionals, family members, and self-advocates on the spectrum. It reviews research ethics concerns around sex and gender; level of support needs; communication modes; race, ethnicity, geography, and language; socioeconomic status; and age. The exclusion of marginalized subgroups of people with autism is a major ethical concern. Researchers can facilitate inclusion by using inclusive terminology, developing accessible communication strategies, or traveling to meet participants. A person-oriented research ethics framework described in this paper structures the advice offered in the literature to create inclusive and supportive research environments.
引用
收藏
页码:22 / 36
页数:15
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