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

  • A. J. FoglemanEmail author
  • W. E. Zahnd
  • A. E. Lipka
  • R. S. Malhi
  • S. Ganai
  • K. R. Delfino
  • W. D. Jenkins
Original Article

Abstract

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).

Keywords

Rural Genetic testing Underserved population perceptions Personalized medicine 

Notes

Compliance with ethical standards

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Department of Population Science and PolicySouthern Illinois University School of MedicineSpringfieldUSA
  2. 2.Rural and Minority Health Research Center, Arnold School of Public HealthUniversity of South CarolinaColumbiaUSA
  3. 3.Department of Crop SciencesUniversity of IllinoisUrbanaUSA
  4. 4.Departments of Anthropology and Animal Biology, Carl R. Woese Institute for Genomic BiologyUniversity of Illinois Urbana-ChampaignUrbanaUSA
  5. 5.Department of SurgerySouthern Illinois University School of MedicineSpringfieldUSA
  6. 6.Center for Clinical ResearchSouthern Illinois University School of MedicineSpringfieldUSA

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