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

A. J. Fogleman, W. E. Zahnd, A. E. Lipka, R. S. Malhi, S. Ganai, K. R. Delfino, W. D. Jenkins

Research output: Contribution to journalArticlepeer-review


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).

Original languageEnglish (US)
Pages (from-to)417-423
Number of pages7
JournalJournal of Community Genetics
Issue number3
StatePublished - Jul 4 2019


  • Genetic testing
  • Personalized medicine
  • Rural
  • Underserved population perceptions

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)


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