Brief Report: Under-Representation of African Americans in Autism Genetic Research: A Rationale for Inclusion of Subjects Representing Diverse Family Structures

• Published in: Journal of autism and developmental disorders Vol. 40; no. 5; pp. 633 - 639
• Main Authors: Hilton, Claudia L., Fitzgerald, Robert T., Jackson, Kelley M., Maxim, Rolanda A., Bosworth, Christopher C., Shattuck, Paul T., Geschwind, Daniel H., Constantino, John N.
• Format: Journal Article
• Language: English
• Published: Boston Springer US 01.05.2010; Springer; Springer Nature B.V
• Subjects: Adolescent; African American Children; African American Students; African Americans; Autism; Autism Spectrum Disorders; Autistic Disorder - ethnology; Autistic Disorder - psychology; Behavioral Science and Psychology; Biological and medical sciences; Biomedicine; Black or African American - psychology; Black or African American - statistics & numerical data; Brief Report; Child; Child Abuse; Child and School Psychology; Child clinical studies; Child, Preschool; Developmental Disabilities; Developmental disorders; Disproportionate Representation; Educational Quality; Eligibility; Ethnicity; Family; Family Characteristics - ethnology; Family Structure; Female; Genetic aspects; Genetic Research; Genetics; Humans; Infant; Infantile autism; Male; Medical sciences; Medical Services; Minority Group Children; Missouri - ethnology; Neurosciences; Pediatrics; Psychiatry; Psychology; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Public Health; Registries - statistics & numerical data; Research Needs; Research Subjects; Schizophrenia; Scientific Research; Whites; Missouri; Ethnicity; Minority representation; African American; Social environment; Human; Developmental disorder; Group structure; Ethnic group; Autism; Minority; Scientific research; Family environment; Genetics
• ISSN: 0162-3257; 1573-3432; 1573-3432
• DOI: 10.1007/s10803-009-0905-2

African American children with autism are seriously under-represented in existing genetic registries and biomedical research studies of autism. We estimated the number of African American children with autism in the St. Louis region using CDC surveillance data and present the outcomes of a concerted effort to enroll approximately one-third of that population into either of two large national genetic autism registries. The results revealed that even after traditional barriers to research participation were addressed and all contacted families expressed a willingness to participate, 67% of the reachable families were disqualified from participation because of family structure alone. Comprehensive efforts—including expansion of eligibility to families of diverse structure—are warranted to facilitate the inclusion of African American children in biomedical research.