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

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

Research output: Contribution to journalArticle

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).

Original languageEnglish (US)
Pages (from-to)417-423
Number of pages7
JournalJournal of Community Genetics
Volume10
Issue number3
DOIs
StatePublished - Jul 4 2019

Fingerprint

Genetic Testing
Rural Population
Computer Security
Precision Medicine
Telemedicine
Privacy
Population Genetics
Vulnerable Populations
Insurance
Early Detection of Cancer
Costs and Cost Analysis
Neoplasms

Keywords

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

ASJC Scopus subject areas

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

Cite this

Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities. / Fogleman, A. J.; Zahnd, W. E.; Lipka, Alexander Edward; Malhi, Ripan S; Ganai, S.; Delfino, K. R.; Jenkins, W. D.

In: Journal of Community Genetics, Vol. 10, No. 3, 04.07.2019, p. 417-423.

Research output: Contribution to journalArticle

Fogleman, A. J. ; Zahnd, W. E. ; Lipka, Alexander Edward ; Malhi, Ripan S ; Ganai, S. ; Delfino, K. R. ; Jenkins, W. D. / Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities. In: Journal of Community Genetics. 2019 ; Vol. 10, No. 3. pp. 417-423.
@article{5f0d725c57cc4b8e8736e0bbb3474cbd,
title = "Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities",
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 = "Genetic testing, Personalized medicine, Rural, Underserved population perceptions",
author = "Fogleman, {A. J.} and Zahnd, {W. E.} and Lipka, {Alexander Edward} and Malhi, {Ripan S} and S. Ganai and Delfino, {K. R.} and Jenkins, {W. D.}",
year = "2019",
month = "7",
day = "4",
doi = "10.1007/s12687-019-00407-w",
language = "English (US)",
volume = "10",
pages = "417--423",
journal = "Journal of Community Genetics",
issn = "1868-310X",
publisher = "Springer Verlag",
number = "3",

}

TY - JOUR

T1 - Knowledge, attitudes, and perceived barriers towards genetic testing across three rural Illinois communities

AU - Fogleman, A. J.

AU - Zahnd, W. E.

AU - Lipka, Alexander Edward

AU - Malhi, Ripan S

AU - Ganai, S.

AU - Delfino, K. R.

AU - Jenkins, W. D.

PY - 2019/7/4

Y1 - 2019/7/4

N2 - 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).

AB - 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).

KW - Genetic testing

KW - Personalized medicine

KW - Rural

KW - Underserved population perceptions

UR - http://www.scopus.com/inward/record.url?scp=85060736552&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85060736552&partnerID=8YFLogxK

U2 - 10.1007/s12687-019-00407-w

DO - 10.1007/s12687-019-00407-w

M3 - Article

AN - SCOPUS:85060736552

VL - 10

SP - 417

EP - 423

JO - Journal of Community Genetics

JF - Journal of Community Genetics

SN - 1868-310X

IS - 3

ER -