Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry

Ademuyiwa F, Salyer P, Ma Y, Fisher S, Colditz G, Weilbaecher K, Bierut L (2019) Assessing the effectiveness of the National Comprehensive Cancer Network genetic testing guidelines in identifying African American breast cancer patients with deleterious genetic mutations. Breast Cancer Res Treat 178. https://doi.org/10.1007/s10549-019-05359-w

Benkert R, Peters RM, Clark R, Keves-Foster K (2006) Effects of perceived racism, cultural mistrust and trust in providers on satisfaction with care. J Natl Med Assoc 98(9):1532

PubMed  PubMed Central  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 

Cohn EG, Husamudeen M, Larson EL, Williams JK (2015) Increasing participation in genomic research and biobanking through community-based capacity building. J Genet Couns 24(3):491–502. https://doi.org/10.1007/s10897-014-9768-6

Article  PubMed  Google Scholar 

Connor J, Kyalwazi A, Turkson-Ocran RA, Ölveczky D (2022) Promoting Inclusive Recruitment: a Qualitative Study of Black Adults’ Decision to Participate in Genetic Research. J Urban Health 99(5):803–812. https://doi.org/10.1007/s11524-022-00664-0

Article  PubMed  PubMed Central  Google Scholar 

Fisher ER, Pratt R, Esch R, Kocher M, Wilson K, Lee W, Zierhut HA (2020) 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):e1099. https://doi.org/10.1002/mgg3.1099

Article  Google Scholar 

Gopichandran V, Chetlapalli SK (2013) Factors influencing trust in doctors: a community segmentation strategy for quality improvement in healthcare. BMJ open, 3(12), e004115

Halbert CH, McDonald J, Vadaparampil S, Rice L, Jefferson M (2016) Conducting Precision Medicine Research with African Americans. PLoS ONE 11(7):e0154850. https://doi.org/10.1371/journal.pone.0154850

Article  CAS  PubMed  PubMed Central  Google Scholar 

Herrstein R, Murray C (1996) The Bell Curve. Free

Institute of Medicine (US) Committee on the Review and Assessment of the NIH’s Strategic Research Plan and Budget to Reduce and Ultimately Eliminate Health Disparities Thomson GE, Mitchell F, Williams MB, eds. Examining the Health Disparities Research Plan of the National Institutes of Health: Unfinished Business. (2006). The National Academies Collection: Reports funded by National Institutes of Health. https://doi.org/10.17226/11602

Ioannidis JP, Ntzani EE, Trikalinos TA (2004) Racial’differences in genetic effects for complex diseases. Nat Genet 36(12):1312–1318

Article  CAS  PubMed  Google Scholar 

James RD, Yu J-H, Henrikson NB, Bowen DJ, Fullerton SM (2008) Strategies and stakeholders: minority recruitment in cancer genetics research. Public Health Genomics 11(4):241–249

Article  Google Scholar 

Johnson VA, Powell-Young YM, Torres ER, Spruill IJ (2011) A systematic review of strategies that increase the recruitment and retention of African American adults in genetic and genomic studies. Abnf j 22(4):84–88. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3439996/pdf/nihms-391831.pdf

PubMed  PubMed Central  Google Scholar 

Landry LG, Ali N, Williams DR, Rehm HL, Bonham VL (2018) Lack of diversity in genomic databases is a barrier to translating precision medicine research into practice. Health Aff 37(5):780–785

Article  Google Scholar 

Lawler M, Morris AD, Sullivan R, Birney E, Middleton A, Makaroff L, Knoppers BM, Horgan D, Eggermont A (2018) A roadmap for restoring trust in Big Data. Lancet Oncol 19(8):1014–1015

Article  PubMed  Google Scholar 

Mapes BM, Foster CS, Kusnoor SV, Epelbaum MI, Auyoung M, Jenkins G, Lopez-Class M, Richardson-Heron D, Elmi A, Surkan K, Cronin RM, Wilkins CH, Pérez-Stable EJ, Dishman E, Denny JC, Rutter JL (2020) Diversity and inclusion for the All of Us research program: A scoping review. PLoS ONE 15(7):e0234962. https://doi.org/10.1371/journal.pone.0234962

Article  CAS  PubMed  PubMed Central  Google Scholar 

Martin AR, Kanai M, Kamatani Y, Okada Y, Neale BM, Daly MJ (2019) Clinical use of current polygenic risk scores may exacerbate health disparities. Nat Genet 51(4):584–591

Article  CAS  PubMed  PubMed Central  Google Scholar 

May T (2020) Are public repository requirements exacerbating lack of diversity? Trends Genet 36(6):390–394

Article  CAS  PubMed  PubMed Central  Google Scholar 

May T, Cannon A, Moss IP, Nakano-Okuno M, Hardy S, Miskell EL, Kelley WV, Curry W, East KM, Acemgil A (2020) Recruiting diversity where it exists: the Alabama Genomic Health Initiative. J Genet Couns 29(3):471–478

Article  PubMed  PubMed Central  Google Scholar 

May T, Bogar S, Spellecy R, Kabasenche W, Craig J, Dick D (2021) Community-Based Participatory Research and its Potential Role in Supporting Diversity in Genomic Science. J Health Care Poor Underserved 32(3):1208–1224

Article  PubMed  Google Scholar 

National Institutes of Health (NIH) (2022) Precision Medicine Initiative: Privacy and Trust Principles. Retrieved from https://allofus.nih.gov/protecting-data-and-privacy/precision-medicine-initiative-privacy-and-trust-principles

Nicol D, Critchley C, McWhirter R, Whitton T (2016) Understanding public reactions to commercialization of biobanks and use of biobank resources. Soc Sci Med 162:79–87

Article  PubMed  Google Scholar 

Oh SS, Galanter J, Thakur N, Pino-Yanes M, Barcelo NE, White MJ, De Bruin DM, Greenblatt RM, Bibbins-Domingo K, Wu AHB, Borrell LN, Gunter C, Powe NR, Burchard EG (2015) Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled. PLoS Med 12(12):e1001918. https://doi.org/10.1371/journal.pmed.1001918

Article  PubMed  PubMed Central  Google Scholar 

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

Article  CAS  PubMed  PubMed Central  Google Scholar 

Powell L (2002) Eugenics and equality: does the Constitution allow policies designed to discourage reproduction among disfavored groups. Yale L Pol’y Rev 20:481

Google Scholar 

Reilly PR (2015) Eugenics and involuntary sterilization: 1907–2015. Annu Rev Genom Hum Genet 16:351–368

Article  CAS  Google Scholar 

Roberts D (2011) Fatal invention: How science, politics, and big business re-create race in the twenty-first century. New Press/ORIM

Sandelowski M (2000) Whatever happened to qualitative description? Res Nurs Health 23(4):334–340

Article  CAS  PubMed  Google Scholar 

Sandelowski M (2010) What’s in a name? Qualitative description revisited. Res Nurs Health 33(1):77–84

Article  PubMed  Google Scholar 

Scherr CL, Ramesh S, Marshall-Fricker C, Perera MA (2019) A Review of African Americans’ Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design [Review]. Front Genet 10. https://doi.org/10.3389/fgene.2019.00548

Schreier M (2012) Qualitative content analysis in practice. Sage

Scott DM, Thomas VG, Otado J, Rockcliffe F, Olopoenia O, Johnson D, Callier S (2020) Attitudes and experiences regarding genetic research among persons of African descent. J Community Genet 11(1):65–72. https://doi.org/10.1007/s12687-019-00422-x

Article  PubMed  Google Scholar 

Shim JK, Foti N, Vasquez E, Fullerton SM, Bentz M, Jeske M, Lee SS (2023) Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity. AJOB Empir Bioeth 14(4):185–196. https://doi.org/10.1080/23294515.2023.2201478

Article  PubMed  PubMed Central  Google Scholar 

Sirugo G, Williams SM, Tishkoff SA (2019) The missing diversity in human genetic studies. Cell 177(1):26–31

Article  CAS  PubMed  PubMed Central  Google Scholar 

Smith CL, Colletto S, May T (In press). Protection of privacy in genomic medicine. In Kenneth Ramos (Ed.), Comprehensive Precision Medicine. Elsevier

Spratt DE, Chan T, Waldron L, Speers C, Feng FY, Ogunwobi OO, Osborne JR (2016) Racial/ethnic disparities in genomic sequencing. JAMA Oncol 2(8):1070–1074

Article  PubMed  PubMed Central  Google Scholar 

Yeh VM, Bergner EM, Bruce MA, Kripalani S, Mitrani VB, Ogunsola TA, Wilkins CH, Griffith DM (2020) Can Precision Medicine Actually Help People Like Me? African American and Hispanic Perspectives on the Benefits and Barriers of Precision Medicine. Ethn Dis 30(Suppl 1):149–158. https://doi.org/10.18865/ed.30.S1.149

Article  PubMed  PubMed Central  Google Scholar 

Zimmerman RK, Tabbarah M, Nowalk MP, Raymund M, Jewell IK, Wilson SA, Ricci EM (2006) Racial differences in beliefs about genetic screening among patients at inner-city neighborhood health centers. J Natl Med Assoc 98(3):370–377. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2576126/pdf/jnma00190-0062.pdf

PubMed  PubMed Central  Google Scholar 

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