Akinleye I, Roberts JS, Royal CDM, Linnenbringer E, Obisesan TO, Fasaye G-A, Green RC (2011) Differences between African American and white research volunteers in their attitudes, beliefs and knowledge regarding genetic testing for Alzheimer’s disease. J Genet Couns 20:650–659. https://doi.org/10.1007/s10897-011-9377-6

Article  PubMed  PubMed Central  Google Scholar 

Bai D, Yip BHK, Windham GC, Sourander A, Francis R, Yoffe R, Glasson E, Mahjani B, Suominen A, Leonard H, Gissler M, Buxbaum JD, Wong K, Schendel D, Kodesh A, Breshnahan M, Levine SZ, Parner ET, Hansen SN, Sandin S (2019) Association of Genetic and Environmental Factors with Autism in a 5-Country cohort. JAMA Psychiatry 76(10):1035–1043. https://doi.org/10.1001/jamapsychiatry.2019.1411

Article  PubMed  PubMed Central  Google Scholar 

Banda DR, Germain DS, McCaskill-Stevens W, Ford JG, Swain SM (2012) A critical review of the enrollment of black patients in cancer clinical trials. Am Soc Clin Oncol Educational Book 32(1):153–157. https://doi.org/10.14694/EdBook_AM.2012.32.88

Article  Google Scholar 

Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, Brozek I, Hughes C (2014) Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 14(1):42. https://doi.org/10.1186/1471-2288-14-42

Article  PubMed  PubMed Central  Google Scholar 

Brandt AM (1978) Racism and research: the case of the Tuskegee Syphilis Study. Hastings center report. 21–29. https://doi.org/10.2307/3561468

Burnett-Hartman AN, Blum-Barnett E, Carroll NM, Madrid SD, Jonas C, Janes K, Alvarado M, Bedoy R, Paolino V, Aziz N, McGlynn EA (2020) Return of research-related genetic test results and genetic discrimination concerns: facilitators and barriers of genetic research participation in diverse groups. Public Health Genomics 23(1–2):59–68. https://doi.org/10.1159/000507056

Article  PubMed  Google Scholar 

Buseh AG, Underwood SM, Stevens PE, Townsend L, Kelber ST (2012) Black African immigrant community leaders’ views on participation in genomics research and DNA biobanking. Nurs Outlook 61:196–204. https://doi.org/10.1016/j.outlook.2012.10.004

Article  PubMed  Google Scholar 

Canedo JR, Miller ST, Myers HF, Sanderson M (2019) Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: systematic review. J Genet Couns 28(3):587–601. https://doi.org/10.1002/jgc4.1078

Article  PubMed  PubMed Central  Google Scholar 

Castillo A, Cohen SR, Miguel J, Warstadt MF (2020) Perceptions of causes and common beliefs of autism spectrum disorder in the US. Res Autism Spectr Disorders 70:101472. https://doi.org/10.1016/j.rasd.2019.101472

Article  Google Scholar 

Chen L-S, Xu L, Huang T-Y, Dhar SU (2013) Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders. Genet Sci 15(4). https://doi.org/10.1038/gim.2012.145

Corbie-Smith G, Thomas SB, Williams MV et al (1999) Attitudes and beliefs of African americans toward participation in medical research. J GEN INTERN MED 14:537–546. https://doi.org/10.1046/j.1525-1497.1999.07048.x

Article  PubMed  PubMed Central  CAS  Google Scholar 

Corrigan O (2003) Empty ethics: the problem with informed consent. Sociol Health Illn 25(7):768–792. https://doi.org/10.1046/j.1467-9566.2003.00369.x

Article  PubMed  Google Scholar 

Feliciano P, Zhou., Astrovskaya I et al (2019) Exome sequencing of 457 autism families recruited online provides evidence for autism risk genes. NPJ Genom. Med 4, 19 (2019). https://doi.org/10.1038/s41525-019-0093-8

Fisher ER, Pratt R, Esch R, Kocher M, Wilson K, Lee W, Zierhut HA (2019) The role of race and ethnicity in views toward and participation in genetic studies and Precision Medicine Research in the United States: a systematic review of qualitative and quantitative studies. Mol Genet Genom Med 8(2). https://doi.org/10.1002/mgg3.1099

Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T (2001) African americans’ views on research and the Tuskegee Syphilis study. Soc Sci Med 52(5):797–808. https://doi.org/10.1016/S0277-9536(00)00178-7

Article  PubMed  CAS  Google Scholar 

George S, Duran N, Norris K (2014) A systematic review of barriers and facilitators to minority research participation among African americans, latinos, Asian americans, and Pacific islanders. Am J Public Health 104(2). https://doi.org/10.2105/ajph.2013.301706

Geschwind DH, State MW (2015) Gene hunting in autism spectrum disorder: on the path to precision medicine. Lancet Neurol 14(11):1109–1120. https://doi.org/10.1016/S1474-4422(15)00044-7

Article  PubMed  PubMed Central  Google Scholar 

Grinker RR, Kang-Yi CD, Ahmann C, Beidas RS, Lagman A, Mandell DS (2015) Cultural adaptation and translation of outreach materials on autism spectrum disorder. J Autism Dev Disord 45:2329–2336. https://doi.org/10.1007/s10803-015-2397-6

Article  PubMed  PubMed Central  Google Scholar 

Harry B, Sturges KM, Klingner JK (2005) Mapping the process: an exemplar of process and challenge in grounded theory analysis. Educational Researcher 34(2):3–13. https://doi.org/10.3102/0013189X034002003

Article  Google Scholar 

Hilton, Fitzgerald RT, Jackson KM, Maxim RA, Bosworth CC, Shattuck PT, Geschwind DH, Constantino JN (2010) Under-representation of African americans in Autism Genetic Research: a rationale for inclusion of subjects representing Diverse Family structures. J Autism Dev Disord 40(5):633–639. https://doi.org/10.1007/s10803-009-0905-2

Article  PubMed  Google Scholar 

Johannessen J, Nærland T, Hope S, Torske T, Høyland AL, Strohmaier J, Andreassen OA (2017) Parents’ attitudes toward clinical genetic testing for autism spectrum disorder—data from a Norwegian sample. Int J Mol Sci 18(5):1078. https://doi.org/10.3390/ijms18051078

Article  PubMed  PubMed Central  Google Scholar 

Katigbak C, Foley M, Robert L, Hutchinson MK (2016) Experiences and lessons learned in using community-based participatory research to recruit Asian American Immigrant Research Participants. J Nurs Scholarsh 48(2):210–218. https://doi.org/10.1111/jnu.12194

Article  PubMed  PubMed Central  Google Scholar 

Kiernan M, Oppezzo MA, Resnicow K, Alexander GL (2018) Effects of a methodological infographic on research participants’ knowledge, transparency, and trust. Health Psychol 37(8):782–786. https://doi.org/10.1037/hea0000631

Article  PubMed  PubMed Central  Google Scholar 

Levkoff S, Sanchez H (2003) Lessons learned about minority recruitment and retention from the Centers on Minority Aging and Health Promotion. Gerontologist 43(1):18–26. https://doi.org/10.1093/geront/43.1.18

Article  PubMed  Google Scholar 

Lucas HM, Lewis AM, Lupo PJ, Schaaf CP (2022) Parental perceptions of genetic testing for children with autism spectrum disorders. Am J Med Genet Part A 188(1):178–186. https://doi.org/10.1002/ajmg.a.62517

Article  PubMed  Google Scholar 

Mandell DS, Listerud J, Levy SE, Pinto-Martin JA (2002) Race differences in the age at diagnosis among Medicaid-eligible children with autism. J Am Acad Child Adolesc Psychiatry 41(12):1447–1453. https://doi.org/10.1097/00004583-200212000-00016

Article  PubMed  Google Scholar 

Maye M, Boyd BA, Martínez-Pedraza F, Halladay A, Thurm A, Mandell DS (2021) Biases, barriers, and possible solutions: Steps towards addressing autism researchers under-engagement with racially, ethnically, and socioeconomically diverse communities. J Autism Dev Disord, 1–6. https://doi.org/10.1007/s10803-021-05250-y

Murphy E, Thompson A (2009) An exploration of attitudes among black americans towards psychiatric genetic research. Psychiatry 72(2):177–194. https://doi.org/10.1521/psyc.2009.72.2.177

Article  PubMed  Google Scholar 

Palmer CG, Martinez A, Fox M, Sininger Y, Grody WW, Schimmenti LA (2007) Ethnic differences in parental perceptions of genetic testing for deaf infants. J Genet Couns 17(1):129–138. https://doi.org/10.1007/s10897-007-9134-z

Article  PubMed  Google Scholar 

Pettey CM, McSweeney JC, Stewart KE, Price ET, Cleves MA, Heo S, Souder E (2015) Perceptions of family history and genetic testing and feasibility of pedigree development among African americans with hypertension. Eur J Cardiovasc Nurs 14:8–15. https://doi.org/10.1177/1474515114556198

Article  PubMed  Google Scholar 

Pinto D, Pagnamenta AT, Klei L, Anney R, Merico D, Regan R et al (2010) Functional impact of global rare copy number variation in autism spectrum disorders. Nature 466(7304):368–372. https://doi.org/10.1038/nature09146

Article  PubMed  PubMed Central  CAS  Google Scholar 

Popejoy AB, Fullerton SM (2016) Genomics is failing on diversity. Nature 538(7624):161–164

Article  PubMed  PubMed Central  CAS  Google Scholar 

R Core Team (2022) R: A Language and Environment for Statistical Computing. R Foundation for Statistical Computing, Vienna. https://www.R-project.org

Reiff M, Bugos E, Giarelli E, Bernhardt BA, Spinner NB, Sankar PL, Mulchandani S (2017) Set in stone or ray of hope: parents’ beliefs about cause and prognosis after genomic testing of children diagnosed with autism. J Autism Dev Disord 47:1453–1463. https://doi.org/10.1007/s10803-017-3067-7

Article