Journal of Genetic Counseling

, 18:606 | Cite as

Attitudes and Practice of Genetic Counselors Regarding Anonymous Testing for BRCA1/2

  • Tammy Ader
  • Lisa R. Susswein
  • Nancy P. Callanan
  • James P. Evans
Original Research

Abstract

Patients and clinicians alike view anonymous testing as a potential way to avoid perceived risks of genetic testing such as insurance and employment discrimination and the potential loss of privacy. To assess their experience with and attitudes towards anonymous testing for BRCA1/2, genetic counselors were invited to complete an internet-based survey via the NSGC Familial Cancer Risk Counseling Special Interest Group (FCRC-SIG) listerv. A majority of the 115 respondents (70%) had received requests from patients for anonymous BRCA1/2 testing at some point in their careers and 43% complied with this request. Most counselors, however, encountered such requests infrequently, 1–5 times per year. Although genetic counselors do not generally encourage anonymous testing and over a third of respondents feel it should never be offered, a substantial subset support its use under specific circumstances. In general, a strong consensus exists among counselors that anonymous testing should not be offered routinely. In light of the current legislative landscape, it is of note that a substantial proportion of respondents (42.7%) cited the threat of life insurance discrimination as a reason for pursuing AT, and fewer cited health insurance (30.0%) or employment discrimination (29.1%) as justifications. Since there exists no federal legislative protections against discrimination by life insurance companies, it makes sense that genetic counselors were more responsive to this issue as opposed to the threat of discrimination in health insurance and employment.

Keywords

BRCA1 BRCA2 Genetic testing Anonymous testing Genetic discrimination Breast cancer Health insurance Life insurance Employment discrimination Insurance discrimination GINA 

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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Tammy Ader
    • 1
  • Lisa R. Susswein
    • 2
  • Nancy P. Callanan
    • 1
  • James P. Evans
    • 2
  1. 1.Genetic Counseling ProgramUniversity of North Carolina at GreensboroGreensboroUSA
  2. 2.Department of GeneticsUniversity of North Carolina at Chapel HillChapel HillUSA

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