Impact of a genetic counseling requirement prior to genetic testing

David D. Stenehjem, Trang Au, Amy M. Sainski, Hillevi Bauer, Krystal Brown, Johnathan Lancaster, Vanessa Stevens, Diana I. Brixner

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

Abstract

Background: Genetic counseling by a Genetic Counselor (GC) is a requirement prior to genetic testing for cancer susceptibility genes (GC-mandate policy) for some insurers. This study evaluated the impact of this policy from the patient perspective. Methods: Surveys were sent to individuals for whom their insurer ordered genetic testing for the cancer susceptibility genes BCRA1 and BRCA2 over a 1 year time period that spanned the introduction of a GC-mandate policy. Responses were assessed by time period (before/after policy introduction) and genetic test completion. Results: The surveys were completed by 1247/4950 (25.7%) eligible individuals. After policy introduction, there was no change in the proportion of respondents who completed genetic testing (p = 0.13) or had a mutation (p = 0.55). Overall decisional conflict (uncertainty or feeling uninformed) around genetic testing did not change after policy introduction (p = 0.16), but was significantly higher among respondents who did not complete genetic testing (p < 0.01). Although a larger proportion of respondents saw a GC after policy introduction (p < 0.01), fewer did so to better understand their test results (p < 0.01). The proportion of respondents who did not see a GC due to insurance issues/requirements and time restraints was higher among those tested after policy introduction or who did not complete genetic testing (p < 0.01). In multivariate analysis, respondents with a household income of $25,000 or greater were 3-times more likely to complete testing. Conclusions: A GC-mandate policy did not improve decisional conflict or increase the number of deleterious mutations identified and low-income respondents were less likely to complete testing. On the contrary, insurance requirements and time constraints may be preventing individuals at risk from receiving appropriate testing.

Original languageEnglish (US)
Article number165
JournalBMC Health Services Research
Volume18
Issue number1
DOIs
StatePublished - Mar 7 2018

Bibliographical note

Funding Information:
This work was supported by an unrestricted research grant from Myriad Genetic Laboratories, Inc.

Funding Information:
KB and JL are employees of Myriad Genetics and receive salary and stock options as compensation. DS, TA, AS, HB, VS, and DB have received research funding from Myriad Genetics.

Publisher Copyright:
© 2018 The Author(s).

Copyright:
Copyright 2018 Elsevier B.V., All rights reserved.

Keywords

  • Breast cancer susceptibility genes
  • Cancer screening
  • Genetic testing
  • Hereditary breast and ovarian cancer syndrome
  • Patient survey

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