Evolution of Hereditary Breast Cancer Genetic Services: Are Changes Reflected in the Knowledge and Clinical Practices of Florida Providers?

Genet Test Mol Biomarkers. 2016 Oct;20(10):569-578. doi: 10.1089/gtmb.2016.0113. Epub 2016 Aug 15.

Abstract

Aims: We describe practitioner knowledge and practices related to hereditary breast and ovarian cancer (HBOC) in an evolving landscape of genetic testing.

Methods: A survey was mailed in late 2013 to Florida providers who order HBOC testing. Descriptive statistics were conducted to characterize participants' responses.

Results: Of 101 respondents, 66% indicated either no genetics education or education through a commercial laboratory. Although 79% of respondents were aware of the Supreme Court ruling resulting in the loss of Myriad Genetics' BRCA gene patent, only 19% had ordered testing from a different laboratory. With regard to pretest counseling, 78% of respondents indicated they usually discuss 11 of 14 nationally recommended elements for informed consent. Pretest discussion times varied from 3 to 120 min, with approximately half spending <20 min. Elements not routinely covered by >40% of respondents included (1) possibility of a variant of uncertain significance (VUS) and (2) issues related to life/disability insurance. With regard to genetic testing for HBOC, 88% would test an unaffected sister of a breast cancer patient identified with a BRCA VUS.

Conclusions: Results highlight the need to identify whether variability in hereditary cancer service delivery impacts patient outcomes. Findings also reveal opportunities to facilitate ongoing outreach and education.

Keywords: BRCA; genetic knowledge; genetic service delivery; genetic testing; hereditary breast cancer.

MeSH terms

  • Breast Neoplasms* / genetics
  • Breast Neoplasms* / therapy
  • Delivery of Health Care* / organization & administration
  • Delivery of Health Care* / standards
  • Delivery of Health Care* / trends
  • Female
  • Florida
  • Genetic Services* / organization & administration
  • Genetic Services* / standards
  • Genetic Services* / trends
  • Health Personnel* / organization & administration
  • Health Personnel* / standards
  • Health Personnel* / trends
  • Humans