Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities

Journal of Community Genetics - Tập 10 - Trang 417-423 - 2019
A. J. Fogleman1, W. E. Zahnd2, A. E. Lipka3, R. S. Malhi4, S. Ganai5, K. R. Delfino6, W. D. Jenkins1
1Department of Population Science and Policy, Southern Illinois University School of Medicine, Springfield, USA
2Rural and Minority Health Research Center, Arnold School of Public Health, University of South Carolina, Columbia, USA
3Department of Crop Sciences, University of Illinois, Urbana, USA
4Departments of Anthropology and Animal Biology, Carl R. Woese Institute for Genomic Biology, University of Illinois Urbana-Champaign, Urbana, USA
5Department of Surgery, Southern Illinois University School of Medicine, Springfield, USA
6Center for Clinical Research, Southern Illinois University School of Medicine, Springfield, USA

Tóm tắt

Genetic testing is becoming more prevalent in detecting risk and guiding cancer treatment in our increasingly personalized medicine model. However, few studies have examined underserved populations’ perceptions of genetic testing, especially those of rural dwelling populations. We asked residents of three rural communities to complete a self-administered survey gauging their knowledge, attitudes, and perceived barriers for genetic testing. 64.8% of participants of the overall study completed the survey. Most participants were aware of genetic testing for cancer screening (69.0%) and would likely share results with their family (88.5% if it indicated low risk, 85.9% for high risk). Some barriers were noted, including genetic testing not offered in a clinic nearby (46.9%), insurance company knowing the results (54.0%), cost (49.1%), and no accessible genetic counselors with whom to discuss results (45.6%). Our rural participants were generally knowledgeable about genetic testing, but this may not be reflective of all rural populations. Opportunities exist to mitigate use barriers, expand the utilization of telehealth services and regulatory agency-approved assays, and increase knowledge regarding privacy and protections offered by statute, such as the Genetic Information Nondiscrimination Act (US) and General Data Protection Regulation (Europe).

Tài liệu tham khảo

Allain DC, Friedman S, Senter L (2012) Consumer awareness and attitudes about insurance discrimination post enactment of the genetic information nondiscrimination act. Familial Cancer 11(4):637–644. https://doi.org/10.1007/s10689-012-9564-0 Andrykowski MA, Munn RK, Studts JL (1996) Interest in learning of personal genetic risk for cancer: a general population survey. Prev Med 25:527–536 Buchanan AH, Datta SK, Skinner CS, Hollowell GP, Beresford HF, Freeland T, Rogers B, Boling J, Marcom PK, Adams MB (2015) Randomized trial of telegenetics vs. in-person cancer genetic counseling: cost, patient satisfaction and attendance. J Genet Couns 24(6):961–970. https://doi.org/10.1007/s10897-015-9836-6 CMS (2018) CMS finalizes coverage of next generation sequencing tests, ensuring enhanced access for cancer patients. https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2018-Press-releases-items/2018-03-16.html?DLPage=1&DLEntries=10&DLSort=0&DLSortDir=descending. Accessed 28 May 2018 Cohen SA, Marvin ML, Riley BD, Vig HS, Rousseau JA, Gustafson SL (2013) Identification of genetic counseling service delivery models in practice: a report from the NSGC service delivery model task force. J Genet Couns 22(4):411–421. https://doi.org/10.1007/s10897-013-9588-0 Cyr A, Dunnagan TA, Haynes G (2010) Efficacy of the health belief model for predicting intention to pursue genetic testing for colorectal cancer. J Genet Couns 19(2):174–186 Dean C, Fogleman AJ, Zahnd WE, Lipka AE, Singh Mahli R, Delfino KR, Jenkins WD (2017) Engaging rural communities in genetic research: challenges and opportunities. J Community Genet 8:209–291 Emmet M, Stein Q, Thorpe E, Campion M (2018) Experiences of genetic counselors practicing in rural areas. J Genet Couns 27(1):140–154 Fisk Green R, Dotson WD, Bowen S, Kolor K, Khoury MJ (2015) Genomics in public health: perspective from the Office of Public Health Genomics at the Centers for Disease Control and Prevention (CDC). Healthcare (Basel) 3(3):830–837 Fullenkamp AN, Haynes EN, Meloncon L, Succop P, Nebert DW (2013) Perceptions of genetic research in three rural Appalachian Ohio communities. J Community Genet. 4(1):9–17 Hall MJ, Olopade OI (2006) Disparities in genetic testing: thinking outside the BRCA box. J Clin Oncol 24(14):2197–2203 Hall MA, McEwen, Barton JC, Walker AP, Howe EG, Reiss JA et al (2005) Concerns in a primary care population about genetic discrimination by insurers. Genet Med 7(5):311–316 Hilgart JS, Hayward JA, Coles B, Iredale R (2012) Telegenetics: a systematic review of telemedicine in genetics services. Genet Med 14(9):765–776 Kelly KM, Andrews JE, Case DO, Allard SL, Johnson JD (2007) Information seeking and intentions to have genetic testing for hereditary cancers in rural and Appalachian Kentuckians. J Rural Health 23(2):166–172 Lerner-Ellis J, Khalouie, Sopik V, Narod SA (2015) Genetic risk assessment and prevention: the role of genetic testing panels in breast cancer. Expert Rev Anticancer Ther 15(11):1315–1326 MacDowell M, Glasser M, Fitts M, Fratzke M, Peters K (2009) Perspectives on rural health workforce issues: Illinois-Arkansas comparison. J Rural Health 25(2):135–140. https://doi.org/10.1111/j.1748-0361.2009.00209.x MacDowell M, Glasser M, Fitts M, Nielsen K, Hunsaker M (2010) A national view of rural health workforce issues in the USA. Rural Remote Health 10(3):1531 Mai PL, Vadaparampil ST, Breen N, McNeel TS, Wideroff L, Graubard BI (2014) Awareness of cancer susceptibility genetic testing: the 2000, 2005, and 2010 National Health Interview Surveys. Am J Prev Med 46(5):440–448. https://doi.org/10.1016/j.amepre.2014.01.002. McDonald E, Lamb A, Grillo B, Lucas L, Miesfeldt S (2014) Acceptability of telemedicine and other cancer genetic counseling models of service delivery in geographically remote settings. J Genet Couns 23(2):221–228 Middlemass JB, Yazdani MF, Kai J, Standen PJ, Qureshi N. (2014) Introducing genetic testing for cardiovascular disease in primary care: a qualitative study. Br J Gen Pract May;64(622):e282–e289. doi: https://doi.org/10.3399/bjgp14X679714. Moyer VA, USPSTF (2014) Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. preventive services task force recommendation statement. Ann Int Med 160(4):271–281 Peters N, Domchek SM, Rose A, Polis R, Stopfer J, Armstrong K (2005) Knowledge, attitudes, and utilization of BRCA1/2 testing among women with early-onset breast cancer. Genet Test 9(1):48–53 Portas L, Murgia F, Biino G, Concas MP, Casula L, Milia S et al (2010) History, geography and population structure influence the distribution and heritability of blood and anthropomorphic quantitative traits in non Sardinian genetic isolates. Genet Res (Camb) 92(3):199–208 Prince AER, Roche MI (2014) Genetic information, non-discrimination, and privacy protections in genetic counseling practice. J Genet Couns 23(6):891–902 Salloum RG, George TJ, Silver N, Markham MJ, Hall JM, Guo Y, Bian J, Shenkman EA (2018) Rural-urban and racial-ethnic differences in awareness of direct-to-consumer genetic testing. BMC Public Health 18(1):277. https://doi.org/10.1186/s12889-018-5190-6. Singer CF, Balmana J, Burki N, Delaloge S, Filieri ME, Gerdes A et al. (2019) Genetic counselling and testing of susceptibility genes for therapeutic decision-making in breast cancer - an European consensus statement and expert recommendations. Eur J Canc 106:54–60. https://doi.org/10.1016/j.ejca.2018.10.007 Streecher VJ, Rosenstock IM (1997). The health belief model Cambridge handbook of psychology, health, and medicine pp 113–117. Suther S, Kiros GE (2009) Barriers to the use of genetic testing: a study of racial and ethnic disparities. Genet Med 11(9):655–662. https://doi.org/10.1097/GIM.0b013e3181ab22aa Tanner A, Kim SH, Friedman DB, Foster C, Bergeron CD (2015) Barriers to medical research participation as perceived by clinical trial investigators: communicating with rural and african american communities. J Health Commun 20(1):88–96. https://doi.org/10.1080/10810730.2014.908985 Taylor JY, Peternell B, Smith JA (2013) Attitudes towards genetic testing for hypertension among African American women and girls. Nurs Res Pract 341374 Thompson HS, Valdimarsdottir HB, Jandorf L, Redd W (2003) 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 Tozer D, Lugton C (2007) Cancer genetics in rural primary care: a pilot nurse-led service using a new mobile IT system. Familial Cancer 6(2):221–229 U. S. Department of Health and Human Services (2018) Genomics. https://www.healthypeople.gov/2020/topics-objectives/topic/genomics/objectives. Accessed 20 Dec 2018 World Health Organization (2002) Genomics and world health. www.who.int/rpc/genomics_report.pdf. Accessed 20 Dec 2018