References
- Nelson HD , PappasM , CantorA , HaneyE , HolmesR. Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: updated evidence report and systematic review for the US Preventive Services Task Force. JAMA322(7), 666–685 (2019).
- Chen WY , GarberJE , HighamSet al. BRCA1/2 genetic testing in the community setting. J. Clin. Oncol.20(22), 4485–4492 (2002).
- Ramirez AG , Aparicio-TingFE , de MajorsSS , MillerAR. Interest, awareness, and perceptions of genetic testing among Hispanic family members of breast cancer survivors. Ethn. Dis.16(2), 398–403 (2006).
- Saucier JB , JohnstonD , WicklundCA , Robbins-FurmanP , HechtJT , MongaM. Racial-ethnic differences in genetic amniocentesis uptake. J. Genetic Couns.14(3), 189–195 (2005).
- Wideroff L , VadaparampilST , BreenN , CroyleRT , FreedmanAN. Awareness of genetic testing for increased cancer risk in the year 2000 National Health Interview Survey. Community Genet.6(3), 147–156 (2003).
- Sirugo G , WilliamsSM , TishkoffSA. The missing diversity in human genetic studies. Cell177(1), 26–31 (2019).
- Mathew SS , BarwellJ , KhanN , LynchE , ParkerM , QureshiN. Inclusion of diverse populations in genomic research and health services: genomix workshop report. J. Community Genet.8(4), 267–273 (2017).
- Popejoy AB , FullertonSM. Genomics is failing on diversity. Nature538(7624), 161–164 (2016).
- Cragun D , KinneyAY , PalT. Care delivery considerations for widespread and equitable implementation of inherited cancer predisposition testing. Expert Rev. Mol. Diagn.17(1), 57–70 (2017).
- Hindorff LA , BonhamVL , Ohno-MachadoL. Enhancing diversity to reduce health information disparities and build an evidence base for genomic medicine. Per. Med.15(5), 403–412 (2018).
- Humes KR , JonesNA , RamirezRR. Overview of race and hispanic origin: 2010 (2011). www.census.gov/prod/cen2010/briefs/c2010br-02.pdf
- Aviles-Santa ML , Colon-RamosU , LindbergNM , MatteiJ , PasquelFJ , PerezCM. From sea to shining sea and the great plains to patagonia: A review on current knowledge of diabetes mellitus in hispanics/latinos in the US and latin America. Front Endocrinol.8, 298 (2017).
- United States Census Bureau . Quick facts 2018 (2018). www.census.gov/quickfacts/fact/table/US/RHI725218#qf-headnote-b
- U.S Deptartment of Health and Human Services Office of Minority Health . Profile: Hispanic/Latino Americans (2019). https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=64
- Aponte J . Health disparities and Hispanics. Hisp Health Care Int.15(2), 51 (2017).
- Borrell LN , CrawfordND. Disparities in self-reported hypertension in Hispanic subgroups, non-Hispanic black and non-Hispanic white adults: the national health interview survey. Ann. Epidemiol.18(10), 803–812 (2008).
- Hertz RP , UngerAN , FerrarioCM. Diabetes, hypertension, and dyslipidemia in Mexican Americans and non-Hispanic whites. Am. J. Prev. Med.30(2), 103–10 (2006).
- Yanez B , McGintyHL , BuitragoD , RamirezAG , PenedoFJ. Cancer outcomes in hispanics/latinos in the United States: an integrative review and conceptual model of determinants of health. J. Lat. Psychol.4(2), 114–129 (2016).
- CDC . Cancer Screening – United States, 2010 (2012). www.cdc.gov/mmwr/preview/mmwrhtml/mm6103a1.htm
- Wells KJ , RoetzheimRG. Health disparities in receipt of screening mammography in Latinas: a critical review of recent literature. Cancer Control14(4), 369–379 (2007).
- Byrd TL , ChavezR , WilsonKM. Barriers and facilitators of cervical cancer screening among Hispanic women. Ethn. Dis.17(1), 129–134 (2007).
- Davis JL , BynumSA , KatzRV , BuchananK , GreenBL. Sociodemographic differences in fears and mistrust contributing to unwillingness to participate in cancer screenings. J. Health Care Poor Underserved23(Suppl. 4), 67–76 (2012).
- Gil-Gonzalez D , Carrasco-PortinoM , Vives-CasesC , Agudelo-SuarezAA , CastejonBolea R , Ronda-PerezE. Is health a right for all? An umbrella review of the barriers to health care access faced by migrants. Ethn. Health20(5), 523–541 (2015).
- Institute MP . Migration Policy Institute tabulations of the U.S. census bureau american community survey (ACS) and decennial census 2019 (2019). www.migrationpolicy.org/data/state-profiles/state/language/US
- Ryan C . Language Use in the United States: 2011 (2013). www2.census.gov/library/publications/2013/acs/acs-22/acs-22.pdf
- Suther S , KirosGE. Barriers to the use of genetic testing: a study of racial and ethnic disparities. Genet. Med.11(9), 655–662 (2009).
- Murphy EJ , WickramaratneP , WeissmanMM. Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr. Genet.19(4), 186–194 (2009).
- Thompson HS , ValdimarsdottirHB , JandorfL , ReddW. Perceived disadvantages and concerns about abuses of genetic testing for cancer risk: differences across African American, Latina and Caucasian women. Patient Educ. Couns.51(3), 217–227 (2003).
- Sussner KM , ThompsonHS , ValdimarsdottirHB , ReddWH , JandorfL. Acculturation and familiarity with, attitudes towards and beliefs about genetic testing for cancer risk within Latinas in East Harlem, New York City. J. Genet. Couns.18(1), 60–71 (2009).
- Galvan FH , BogartLM , KleinDJ , WagnerGJ , ChenYT. Medical mistrust as a key mediator in the association between perceived discrimination and adherence to antiretroviral therapy among HIV-positive Latino men. J. Behav. Med.40(5), 784–793 (2017).
- Martinez P , CummingsC , Karriker-JaffeKJ , ChartierKG. Learning from Latino voices: focus groups’ insights on participation in genetic research. Am. J. Addict.26(5), 477–485 (2017).
- Amendola LM , BergJS , HorowitzCRet al. The clinical sequencing evidence-generating research consortium: integrating genomic sequencing in diverse and medically underserved populations. Am. J. Hum. Genet.103(3), 319–327 (2018).
- United States Census Bureau . Top languages other than english spoken in 1980 and changes in relative rank, 1990–2010 (2013) www.census.gov/dataviz/visualizations/045/
- Fagerlin A , Zikmund-FisherBJ , UbelPA , JankovicA , DerryHA , SmithDM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med. Decis. Making27(5), 672–680 (2007).
- Shea JA , MiccoE , DeanLT , McMurphyS , SchwartzJS , ArmstrongK. Development of a revised Health Care System Distrust scale. J. Gen. Intern. Med.23(6), 727–732 (2008).
- Huskisson EC . Measurement of pain. Lancet2(7889), 1127–1131 (1974).
- Varni JW , SeidM , RodeCA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care37(2), 126–139 (1999).
- Ware J Jr , KosinskiM , KellerSD. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med. Care34(3), 220–233 (1996).
- Li M , BennetteCS , AmendolaLMet al. The feelings about genomic testing results (FACToR) questionnaire: development and preliminary validation. J. Genet. Couns.28(2), 477–490 (2019).
- Kohler JN , TurbittE , LewisKLet al. Defining personal utility in genomics: a Delphi study. Clin. Genet.92(3), 290–297 (2017).
- Biesecker BB , WoolfordSW , KleinWMPet al. PUGS: a novel scale to assess perceptions of uncertainties in genome sequencing. Clin. Genet.92(2), 172–179 (2017).
- Horowitz CR , Abul-HusnNS , EllisSet al. Determining the effects and challenges of incorporating genetic testing into primary care management of hypertensive patients with African ancestry. Contemp. Clin. Trials47, 101–8 (2016).
- Hebert PL , SiskJE , WangJJet al. Cost-effectiveness of nurse-led disease management for heart failure in an ethnically diverse urban community. Ann. Intern. Med.149(8), 540–8 (2008).
- VEN Hoefman RJ , BrouwerWBF, Institute of health policy & management, Institute for Medical Technology Assessment. iMTA valuation of informal care questionnaire (iVICQ). Version 1.0. (2011). www.bmg.eur.nl/english/imta/publications/manuals_questionnaires/
- CDC . National health and nutrition examination survey (1999–2000) health insurance (HIQ) (2004). www.cdc.gov/Nchs/Nhanes/1999-2000/HIQ.htm
- Lobb EA , ButowPN , MooreAet al. Development of a communication aid to facilitate risk communication in consultations with unaffected women from high risk breast cancer families: a pilot study. J. Genet. Couns.15(5), 393–405 (2006).
- Sanderson SC , SuckielSA , ZweigM , BottingerEP , JabsEW , RichardsonLD. Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public. Genet. Med.18(5), 501–512 (2016).
- Hilner JE , PerdueLH , SidesEGet al. Designing and implementing sample and data collection for an international genetics study: the Type 1 Diabetes Genetics Consortium (T1DGC). Clin. Trials7(Suppl. 1), S5–S32 (2010).
- Lencz T , KnowlesE , DaviesGet al. Molecular genetic evidence for overlap between general cognitive ability and risk for schizophrenia: a report from the Cognitive Genomics consorTium (COGENT). Mol. Psychiatry19(2), 168–174 (2014).
- Davies G , ArmstrongN , BisJCet al. Genetic contributions to variation in general cognitive function: a meta-analysis of genome-wide association studies in the CHARGE consortium (N = 53949). Mol. Psychiatry20(2), 183–192 (2015).
- Bellcross C , HermstadA , TalloC , StanislawC. Validation of version 3.0 of the breast cancer genetics referral screening tool (B-RST). Genet. Med.21(1), 181–184 (2019).
- Kastrinos F , UnoH , UkaegbuCet al. Development and validation of the PREMM5 model for comprehensive risk assessment of Lynch Syndrome. J. Clin. Oncol.35(19), 2165–2172 (2017).
- National Comprehensive Cancer Network . Genetic/familial high-risk assessment: breast, ovarian, and pancreatic 2021. J. Natl Compr. Canc. Netw.19(1), 77–102 (2021).
- National Comprehensive Cancer Network . Genetic/familial high-risk assessment: colorectal 2019. J. Natl Compr Canc. Netw.17(9), 1032–1041 (2019).
- Health Center Program . 2017 Denver health & hospital authority health center program awardee data (2019). https://bphc.hrsa.gov/uds2017/datacenter.aspx?q=d&bid=080060&state=CO&year=2017
- Barrio-Cantalejo IM , Simon-LordaP , MelguizoM , EscalonaI , MarijuanMI , HernandoP. [Validation of the INFLESZ scale to evaluate readability of texts aimed at the patient]. An. Sist. Sanit. Navar.31(2), 135–152 (2008).
- Center NF . New York city neighborhood data profiles (2020). https://furmancenter.org/neighborhoods
- Tu HFL , DoubledayA , LiaoK. San Francisco bay area: major players drive regional network development (2016). www.chcf.org/wp-content/uploads/2017/12/PDF-AlmanacRegMktBriefSanFran16.pdf
- United States Census Bureau . American community survey 1-Year estimates, California (2017). https://data.census.gov/cedsci/profile?q=California&g=0400000US06&table=DP05&tid=ACSDP1Y2018.DP05
- United States Census Bureau . Quick facts population 2020 (2020). www.census.gov/quickfacts/fact/table/CA/POP815218#POP815218
- CCSERCP . CSER research materials. https://cser-consortium.org/cser-research-materials
- DuBay WH . Smart language: readers, readability, and the grading of text (2007). https://files.eric.ed.gov/fulltext/ED506403.pdf
- Flesch R . The art of plain talk.Harper and Row, New York, NY (1946). https://dc135.files.wordpress.com/2012/11/flesch-the-art-of-plain-talk.pdf
- Garner B . Legal Writing in plain english.The University of Chicago Press, Chicago, IL, 227 (2001).
- Flaskerud JH . Is the Likert scale format culturally biased?Nurs Res.37(3), 185–186 (1988).
- Bernal H , WooleyS , SchensulJJ. The challenge of using Likert-type scales with low-literate ethnic populations. Nurs. Res.46(3), 179–181 (1997).
- McQuiston C , LarsonK , ParradoEA , FlaskerudJH. AIDS knowledge and measurement considerations with unacculturated Latinos. West J. Nurs. Res.24(4), 354–372 (2002).
- Stableford S , MettgerW. Plain language: a strategic response to the health literacy challenge. J. Public Health Policy28(1), 71–93 (2007).