Attitudes and Practice of Genetic Counselors Regarding Anonymous Testing for BRCA1/2
- 124 Downloads
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.
KeywordsBRCA1 BRCA2 Genetic testing Anonymous testing Genetic discrimination Breast cancer Health insurance Life insurance Employment discrimination Insurance discrimination GINA
- Breast Cancer Risk Reduction. National Comprehensive Cancer Network (NCCN) Guidelines, v1, 2007. Available at: www.nccn.org/professionals/physician_gls/PDF/breast_risk.pdf.
- Coalition for Genetic Fairness. (2008). How Does GINA impact ME? February 1, 2009 from http://www.geneticfairness.org/ginaresource_impact.html#1.
- Genetic and Health Insurance State Anti-Discrimination Laws. (January 2008). National Conference of State Legislators. Retrieved February 22, 2008 from http://www.ncsl.org/programs/health/genetics/ndishlth.htm.
- Genetic Information Nondiscrimination Act of 2008 (GINA): Information for researchers and healthcare professionals. (April 2009). National Human Genome Research Institute. Retrieved July 17, 2009, from http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf.
- State Genetics Employment Laws. (January 2008). National Conference of State Legislators. Retrieved February 22, 2008 from http://www.ncsl.org/programs/health/genetics/ndiscrim.htm.
- Genetic discrimination. (January 2008). National Human Genome Research Institute. Retrieved February 22, 2008, from http://www.genome.gov/10002077.
- Peterson, E. A., Milliron, K. J., Lewis, K. E., Goold, S. D., & Merajver, S. D. (2002). Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiology, Biomarkers & Prevention, 11, 79–87.Google Scholar