Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net
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ORIGINAL ARTICLE
Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net institution Ian K. Komenaka 1,2 & Jesse N. Nodora 3 & Lisa Madlensky 3 & Lisa M. Winton 1 & Meredith A. Heberer 1 & Richard B. Schwab 3 & Jeffrey N. Weitzel 4 & Maria Elena Martinez 3
Received: 22 August 2014 / Accepted: 15 November 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract Some communities and populations lack access to genetic cancer risk assessment (GCRA) and testing. This is particularly evident in safety-net institutions, which serve a large segment of low-income, uninsured individuals. We describe the experience of a safety-net clinic with limited resources in providing GCRA and BRCA1/2 testing. We compared the proportion and characteristics of high-risk women who were offered and underwent GCRA and genetic testing. We also provide a description of the mutation profile for affected women. All 125 patients who were offered GCRA accepted to undergo GCRA. Of these, 72 % had a breast cancer diagnosis, 70 % were Hispanic, 52.8 % were non-English speakers, and 66 % did not have health insurance. Eighty four (67 %) were offered genetic testing and 81 (96 %) agreed. Hispanic women, those with no medical insurance, and those with a family history of breast cancer were significantly more likely to undergo testing (p > 0.01). Twelve of 81 (15 %) patients were found to have deleterious mutations, seven BRCA1, and five BRCA2. Our experience shows that it is possible to offer GCRA and genetic testing even in the setting of limited resources for these services. This is important given
* Ian K. Komenaka [email protected] 1
Maricopa Medical Center, Hogan Building, 2nd Floor, 2601 E Roosevelt Street, Phoenix, AZ 85008, USA
2
Arizona Cancer Center, University of Arizona, Tucson, AZ, USA
3
University of California, San Diego, Moores Cancer Center, La Jolla, CA, USA
4
Division of Clinical Cancer Genetics, City of Hope, Duarte, CA, USA
that a large majority of the low-income women in our study agreed to undergo counseling and testing. Our experience could serve as a model for similar low-resource safety-net health settings. Keywords Disparity . Genetic cancer risk assessment . Underinsured . Hispanic . Latina . Minority
Introduction Approximately 5–10 % of breast cancers are associated with hereditary risk factors. Mutations in the BRCA1 and BRCA2 (BRCA) genes convey greatly elevated lifetime risks of breast and ovarian cancers (Chen and Parmigiani 2007), and several other genes have been firmly established as high- and moderate-risk genes for breast and other cancers (Njiaju and Olopade 2012). BRCA mutation carriers also tend to have an early age of onset of breast cancer, often before the age of 40 years (Daly et al. 2010), which is when breast cancer screening typically starts for average-risk populations. Identification of individuals and family members who carry a mutation is important in order to implement appropriate breast cancer screening and initiate discus
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