Familial Cancer

, Volume 8, Issue 4, pp 363–369

Survey of unaffected BRCA and mismatch repair (MMR) mutation positive individuals

  • Wendy McKinnon
  • Kimberly C. Banks
  • Joan Skelly
  • Wendy Kohlmann
  • Robin Bennett
  • Kristen Shannon
  • Joy Larson-Haidle
  • Taka Ashakaga
  • Jeffrey N. Weitzel
  • Marie Wood
Article

DOI: 10.1007/s10689-009-9248-6

Cite this article as:
McKinnon, W., Banks, K.C., Skelly, J. et al. Familial Cancer (2009) 8: 363. doi:10.1007/s10689-009-9248-6

Abstract

Many individuals do not proceed with cancer predisposition testing due to fears of genetic discrimination (GD). We report the results of a survey of 47 unaffected, mutation positive individuals regarding insurance outcomes. Participants recruited from six different Cancer Risk Programs across the country were queried about their experiences with health, life, and disability insurance, as well as employment issues. Eighty-seven percent of participants carried a BRCA mutation and 87% were part of a group insurance plan at the time of testing. Forty-seven percent of participants self-paid for testing. Less than 10% of participants reported that their results were placed in the general medical record, while 43% did not know where their results were placed. Due to concerns about GD, 13% of participants stated they avoided changing jobs. Thirteen percent stated that their at-risk relatives had not undergone testing for the familial mutation due to fears about GD. Adverse events following genetic testing included two denials from private health insurers, one denial for average life insurance coverage and one denial for additional disability insurance. There were no reports of job discrimination. Results suggest fear of GD is prevalent, yet data do not support evidence that GD exists.

Keywords

Genetic discriminationGenetic counselingInsurance

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Wendy McKinnon
    • 1
  • Kimberly C. Banks
    • 2
    • 3
  • Joan Skelly
    • 8
  • Wendy Kohlmann
    • 4
  • Robin Bennett
    • 5
  • Kristen Shannon
    • 6
  • Joy Larson-Haidle
    • 7
  • Taka Ashakaga
    • 8
  • Jeffrey N. Weitzel
    • 3
  • Marie Wood
    • 1
  1. 1.Familial Cancer Program of the Vermont Cancer CenterUniversity of Vermont College of MedicineBurlingtonUSA
  2. 2.St. Joseph Hospital Cancer Genetics ProgramOrangeUSA
  3. 3.Department of Clinical Cancer GeneticsCity of Hope Cancer CenterDuarteUSA
  4. 4.Huntsman Cancer InstituteSalt Lake CityUSA
  5. 5.Medical Genetics ClinicsUniversity of Washington Medical CenterSeattleUSA
  6. 6.Mass General Hospital Center for Cancer Risk AssessmentBostonUSA
  7. 7.Humphrey Cancer Center, North Memorial Medical CenterRobbinsdaleUSA
  8. 8.Medical BiostatisticsUniversity of Vermont College of MedicineBurlingtonUSA