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

Fogleman, Amanda; Zahnd, Whitney E.; Lipka, Alexander E.; Malhi, Ripan S.; Ganai, Sabha; Delfino, Kristin; Jenkins, Wiley D.

doi:10.1007/s12687-019-00407-w

Cited by 27 publications

(22 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Fogleman et al, in a post-ACA survey of perceived barriers to genetic testing ( BRCA testing as the example) in three Kentucky rural communities, found “no genetic counselor nearby” to be a major barrier in only 15 % of residents surveyed, while cost was a major barrier in 27 % of participants [ 41 ]. Nevertheless, that study and one performed by the Centers for Disease Control and Prevention described BRCA testing as increasing among non-Metropolitan, rural women with employer-sponsored insurance, likely due to a reduction in cost barriers to testing [ 41 , 42 ]. This trend is suggestive of increasing equity given that one in five rural Americans is a person of color, and in some rural areas, the proportion is greater than 50 % [ 43 ].…”

Section: Resultsmentioning

confidence: 99%

Cancer genetic testing in marginalized groups during an era of evolving healthcare reform

Modell

Allen

Ponte³

et al. 2021

Journal of Cancer Policy

View full text Add to dashboard Cite

Background: The Affordable Care Act and subsequent reforms pose tradeoffs for racial-ethnic, rural, and sex-related groups in the United States experiencing disparities in BRCA1/2 genetic counseling and testing and colorectal cancer screening, calling for policy changes. Methods: A working group of the American Public Health Association Genomics Forum Policy Committee engaged in monthly meetings to examine ongoing literature and identify policy alternatives in the coverage of cancer genetic services for marginalized groups. 589 items were collected; 408 examined. Efforts continued from February 2015 through September 2020. Results: African Americans and Latinos have shown 7–8 % drops in uninsured rates since the Exchanges opened. The ACA has increased BRCA1/2 test availability while several disparities remain, including by sex. Rural testing and screening utilization rates have improved. Medicaid expansion and the inclusion of Medicare in the ACA have resulted in mixed improvements in colorectal cancer screening rates in marginalized groups. Conclusion: Cancer genetic testing and screening to date have Medicaid and Medicare to the marginalized. Attention to value-based design and the way cancer benefits are translated into actual testing and screening are crucial. Policy Summary: The findings suggest the need for further benefits-related health agency interpretation of and amendments to the ACA, continued Medicaid and innovative Medicare expansion, and incorporation of cancer services values-based considerations at several levels, aimed at reducing group disparities.

show abstract

Section: Resultsmentioning

confidence: 99%

Cancer genetic testing in marginalized groups during an era of evolving healthcare reform

Modell

Allen

Ponte³

et al. 2021

Journal of Cancer Policy

View full text Add to dashboard Cite

show abstract

“…Rural oncology practices may also face particular challenges in the delivery of precision oncology. 14,15 Additionally, rural hospitals face closures, aging infrastructures, payment challenges, workforce shortages, Author affiliations and support information (if applicable) appear at the end of this article.…”

Section: Introductionmentioning

confidence: 99%

Distribution of Genomic Testing Resources by Oncology Practice and Rurality: A Nationally Representative Study

Gardner

Doose

Sanchez

et al. 2021

JCO Precision Oncology

View full text Add to dashboard Cite

PURPOSE Oncologists are increasingly using molecular profiling to inform personalized patient treatment decisions. Despite its promising utility, the integration of genomic testing into diverse clinical health care settings across geographic settings has been understudied. METHODS We used data from the National Survey of Precision Medicine in Cancer Treatment, a nationally representative sample of practicing US oncologists, to assess the availability of six genomic testing resources, including on-site pathology, contracts with outside laboratories, on-site genetic counselors, internal policies or protocols for using genomic and biomarker testing, electronic medical record alerts, and genomic or molecular tumor boards. We used multivariate logistic regression models to examine differences in the availability of each genomic testing resource by practice type and rurality while adjusting for payer mix and patient volume. RESULTS A larger proportion of multispecialty group and academic practices had genomic testing resources available compared with solo and nonacademic practices. Electronic medical record alerts were the least available resource, whereas contracts with outside laboratories were the most available resource. Compared with urban practices, there were significantly fewer practices located in rural areas that had on-site pathology, on-site genetic counselors, protocols for genomic tests, and molecular tumor boards. CONCLUSION Genomic testing resources varied by practice type and geography among a nationally representative sample of practicing oncologists. This variation has important implications for the development of interventions and policies to support the more equitable delivery of precision oncology to patients with cancer.

show abstract

“…The weakness in the cancer-related topics such as the link between BRCA1 gene and breast cancer may imply weaker medical implementation of this topic as well as the media coverage of cancer genetics in Iran compared to developed countries with better public knowledge in this regard (Fogleman et al 2019;MacNew et al 2010).…”

Section: Discussionmentioning

confidence: 99%

Applying Rogers’ framework to evaluate public awareness and knowledge of medical genetics in a developing country

2020

View full text Add to dashboard Cite

Public knowledge of medical genetics is essential for better establishment of its services but has been rarely evaluated based on distinguished types of knowledge. We designed and validated a new self-administered questionnaire in Farsi (Persian language) to assess public knowledge of medical genetics based on Rogers' framework. This framework divides knowledge into three types of awareness, how-to (practical) and principles knowledge which refer to knowing the existence, proper use, and theoretical principles of an innovation, respectively. We asked consecutive individuals (n = 306, age ≥ 20 years) visiting health centers in different regions of Yazd, a city in central Iran, to fill out the questionnaire. After validation, we analyzed 280 of the questionnaires which revealed a high degree of internal consistency (Cronbach's alpha 0.90) and a positive linear relationship among the scores of different knowledge. Our respondents had relatively fair awareness and how-to, but generally poor principles knowledge with statistically significantly better scores in females and those with higher education. We observed tangible strengths in topics such as consanguineous marriage, thalassemia, and hereditary predisposition to diabetes and cardiovascular disorders, and weaknesses in areas such as genetic testing and genetics of cancer. Notably, experience of premarital genetic counseling did not show any significant effect, but having a relative with a genetic disorder was significantly linked to better awareness scores. Our study provides a reliable and self-administered questionnaire for the assessment of public knowledge of medical genetics. Despite revealing important strengths and weaknesses in our population sample, larger scale evaluations in Iran and other developing countries are needed for better understanding of the public knowledge as the prerequisite for designing appropriate educational programs.

show abstract

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

Cited by 27 publications

References 30 publications

Cancer genetic testing in marginalized groups during an era of evolving healthcare reform

Cancer genetic testing in marginalized groups during an era of evolving healthcare reform

Distribution of Genomic Testing Resources by Oncology Practice and Rurality: A Nationally Representative Study

Applying Rogers’ framework to evaluate public awareness and knowledge of medical genetics in a developing country

Contact Info

Product

Resources

About