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.
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This pilot study was funded by the National Society of Genetic Counselors Cancer Special Interest Group. Ms. Banks was supported in part by NIH grant #R25 CA85771 (PI: J. Weitzel).
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McKinnon, W., Banks, K.C., Skelly, J. et al. Survey of unaffected BRCA and mismatch repair (MMR) mutation positive individuals. Familial Cancer 8, 363–369 (2009). https://doi.org/10.1007/s10689-009-9248-6
- Genetic discrimination
- Genetic counseling