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Journal of Autism and Developmental Disorders

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01-05-2010 | Brief Report

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

Auteurs: Claudia L. Hilton, Robert T. Fitzgerald, Kelley M. Jackson, Rolanda A. Maxim, Christopher C. Bosworth, Paul T. Shattuck, Daniel H. Geschwind, John N. Constantino

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2010

Abstract

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.

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Autism Genetic Resource Exchange. (2008). AGRE: Autism genetic resource exchange. Retrieved on April 17, 2009, from http://www.agre.org/index.cfm.

Abrahams, B. S., & Geschwind, D. H. (2008). Advances in autism genetics: On the threshold of a new neurobiology. Nature Reviews: Genetics, 9, 341–355.CrossRefPubMed

Alvarez, R., Vasquez, E., Mayorga, C., Feaster, D., & Mitrani, V. (2006). Increasing minority research participation through community organization outreach. Western Journal of Nursing Research, 28(5), 541–560.CrossRefPubMed

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. (text revision).

Armstrong, T., Crum, L., Rieger, R., Bennett, T., & Edwards, L. (1999). Attitudes of African Americans toward participation in medical research. Journal of Applied Social Psychology, 29(3), 552–574.CrossRef

Autism Genome Project Consortium. (2007). Mapping autism risk loci using genetic linkage and chromosomal rearrangements. Nature Genetics, 39(3), 319–328.CrossRef

Beffoe-Bonnie, A. B., Kittles, R. A., Gillanders, E., Liang, O., George, A., Robbins, C., et al. (2006). Genome-wide linkage of 77 families from the African American hereditary prostate cancer study (AAHPC). The Prostate, 67, 22–31.CrossRef

Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal of Mental Retardation, 112(6), 450–461.CrossRefPubMed

Bresnahan, M., Begg, M. D., Brown, A., Schaefer, C., Sohler, N., Insel, B., et al. (2007). Race and risk of schizophrenia in a US birth cohort: Another example of health disparity? International Journal of Epidemiology, 36, 751–758.CrossRefPubMed

Centers for Disease Control. (2007). Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveillance Summaries, 56(SS01), 12–28.

Danchenko, N., Satia, J. A., & Anthony, M. S. (2006). Epidemiology of systemic lupus erythematosus: A comparison of worldwide disease burden. Lupus, 15, 308–318.CrossRefPubMed

Dancy, B. L., Wilbur, J., Talashek, M., Bonner, G., & Barnes-Boyd, C. (2004). Community-based research: Barriers to recruitment of African Americans. Nursing Outlook, 52, 234–240.CrossRefPubMed

DeBaun, M. R., Gorelick, P. B., & Som, S. (2009). Strategies for recruiting and retaining minorities. Frontiers of Neurology and Neuroscience, 25, 118–120.CrossRefPubMed

Desai, P. P., Hendrie, H. C., Evans, R. M., Murrell, J. R., DeKosky, S. T., & Kamboh, M. I. (2003). Genetic variation in apolipoprotein D affects the risk of Alzheimer disease in African-Americans. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics: the Official Publication of the International Society of Psychiatric Genetics, 116B(1), 98–101.

Farmer, D., Jackson, S., Camacho, F., & Hall, M. (2007). Attitudes of AA and low socioeconomic status white women toward medical research. Journal of Health Care for the Poor and Underserved, 18k, 85–99.CrossRef

Fatemi, S. H., King, D. P., Reutiman, T. J., Folsom, T. D., Laurence, J. A., Lee, S., et al. (2008). PDE4B polymorphisms and decreased PDE4B expression are associated with schizophrenia. Schizophrenia Research, 101, 36–49.CrossRefPubMed

Franklin, W. (1991). Black social scientist. In R. L. Jones (Ed.), Black psychology. New York: Cobb & Henry.

Gudmundsson, J., Sulem, P., Manolescu, A., Amundadottir, L. T., Gudbjartsson, D., Helgason, A., et al. (2007). Genome-wide association study identifies a second prostate cancer susceptibility variant at 8q24. Nature Genetics, 39(5), 631–637.CrossRefPubMed

Henderson, G., Garrett, J., Bussey-Jones, J., Moloney, M. E., Blumenthal, C., & Corbie-Smith, G. (2008). Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine, 10, 193–200.CrossRefPubMed

Jones, J. H. (1981). Bad blood: The Tuskegee syphilis experiment. New York: Free Press.

Kugathasan, S., Loizides, A., Babusukumar, U., McGuire, E., Wang, T., Hooper, P., et al. (2005). Comparative phenotypic and CARD15 mutational analysis among African American, Hispanic, and white children with Crohn’s disease. Inflammatory Bowel Disease, 11(7), 631–638.CrossRef

Law, P. (2009). Interactive autism network research. Retrieved on January 08, 2009, from https://www.ianresearch.org/login.

Levkoff, S. E., & Sanchez, H. (2003). Lessons learned about minority recruitment and retention from the centers on minority aging and health promotion. The Gerontologist, 43, 18–26.PubMed

Lovato, L. C., Hill, K., Hertert, S., Hunninghake, D. B., & Probstfield, J. L. (1997). Recruitment for controlled clinical trials: Literature summary and annotated bibliography. Controlled Clinical Trials, 18, 328–357.CrossRefPubMed

Luo, K., Kranzler, H., Lappalainen, J., Rosenheck, R., Charney, D., Zuo, L., et al. (2004). Calcyon gene variation, schizophrenia, and cocaine dependence. American Journal of Medical Genetics Part B (Neuropsychiatric Genetics), 123, 25–30.CrossRef

Mak, W., Cheng, T. S., Chan, K. H., Cheung, R. T. F., & Ho, S. L. (2005). A possible explanation for the racial difference in distribution of large-arterial cerebrovascular disease: Ancestral European settlers evolved genetic resistance to atherosclerosis, but confined to the intracranial arteries. Medical Hypotheses, 65, 637–648.CrossRefPubMed

Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Other Developmental Disorders, 37, 1795–1802.CrossRef

Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of child and Adolescent Psychiatry, 41(12), 1447–1453.CrossRefPubMed

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99, 493–498.CrossRefPubMed

Marquez, M. A., Muhs, J. M., Tosomeen, A., Riggs, B. L., & Melton, L. J. (2003). Costs and strategies in minority recruitment for osteoporosis research. Journal of Bone and Mineral Research, 18, 3–8.CrossRefPubMed

Moynihan, D. P. (1965). Negro family: The case for national action (a report for the U. S. Department of Labor, Office of Policy Planning and Research). Washington, DC: Government Printing Office. Retrieved September 10, 2008 from http://www.blackpast.org/?q=primary/moynihan-report-1965.

Neill, K. M., & Chessa, F. (1998). Recruitment and retention of women in nontherapeutic clinical trials. Applied Nursing Research, 11(3), 148–151.CrossRefPubMed

Patterson, A. R., Davis, H., Shelby, K., McCoy, J., Robinson, L. D., Rao, S. K., et al. (2008). Successful strategies for increasing African American participation in cancer genetic studies: Hopeful signs for equalizing the benefits of genetic medicine. Community Genetics, 11, 208–214.CrossRefPubMed

Perez, R. G., Ezpeleta, L., & Domenech, J. M. (2007). Features associated with the non-participation and drop out by socially-at-risk children and adolescents in mental-health epidemiological studies. Social Psychiatry and Psychiatric Epidemiology, 42, 251–258.CrossRefPubMed

Ries, L. A. G., Melbert, D., Krapcho, M., Stinchcomb, D. G., Howlader, N., Horner, M. J., et al. (eds). (2008). SEER Cancer Statistics Review, 1975–2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission. Retrieved September 4, 2008 from http://seer.cancer.gov/statfacts/html/prost.html.

Rogers, J. L. (2002). Effectiveness of media strategies to increase enrollment and diversity in the women’s health registry. American Journal of Public Health, 92(4), 613–614.CrossRefPubMed

Skinner, C. S., Schildkraut, J. M., Calingaert, B., Hoyo, C., Crankshaw, S. S., Fish, L., et al. (2008). Factors associated with African Americans’ enrollment in a national cancer genetics registry. Community Genetics, 11, 224–233.CrossRefPubMed

Smedley, B., Stith, A., & Nelson, A. (2002). Unequal treatment confronting racial and ethnic disparities in health care (Institute of Medicine). Washington, DC: National Academies Press.

State of Missouri Department of Health and Senior Services. (2009). Retrieved October 2, 2008 from http://www.dhss.mo.gov/ (n.d.).

Thomas, K. C., Ellis, A. R., McLauren, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Other Developmental Disorders, 37, 1902–1912.CrossRef

United States Department of Health and Human Services. (2008). National center for health statistics’ vital statistics natality birth data. Retrieved October, 12, 2008 from http://www.cdc.gov/nchs/births.htm.

U.S. Census Bureau, 2000 Census. (2002). Retrieved October 2, 2008 from http://www.census.gov/prod/2002pubs/c2kprof00-us.pdf.

U. S. Census Bureau. (2003). Educational attainment: 2000. Retrieved January 23, 2009 from http://www.census.gov/prod/2003pubs/c2kbr-24.pdf.

U.S. Census Bureau. (2008). Current population survey. A joint effort between the Bureau of Labor Statistics and the Census Bureau. Retrieved January 22, 2009 from http://pubdb3.census.gov/macro/032008/pov/new01_100.htm.

U.S. Census Bureau, 2006–2007 Census. (2008). America’s families & living arrangements: 2007. Retrieved December 4, 2008 from http://www.census.gov/population/www/socdemo/hh-fam/cps2007.html.

Wang, H., Parry, S., Macones, G., Sammel, M. D., Kuivaniemi, H., Tromp, G., et al. (2006). A functional SNP in the promoter of the SERPINH1 gene increases risk of preterm premature rupture of membranes in African Americans. Proceedings of the National Academy of Sciences, 103, 13463–13467.CrossRef

Widom, C. S., & Brzustowicz, L. M. (2006). MAOA and the “cycle of violence”: Childhood abuse and neglect. MAOA genotype, and risk for violent and antisocial behavior. Biological Psychiatry, 60, 684–689.CrossRefPubMed

Titel: Brief Report: Under-Representation of African Americans in Autism Genetic Research: A Rationale for Inclusion of Subjects Representing Diverse Family Structures
Auteurs: Claudia L. Hilton
Robert T. Fitzgerald
Kelley M. Jackson
Rolanda A. Maxim
Christopher C. Bosworth
Paul T. Shattuck
Daniel H. Geschwind
John N. Constantino
Publicatiedatum: 01-05-2010
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 5/2010
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-009-0905-2

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