Abstract
Cancer genetic testing is surrounded by myriad ethical, legal, and psychosocial implications which are being revisited as testing expands into an everyday practice and into more complicated areas like whole exome and direct-to-consumer testing. We chose to survey cancer genetic counselors and physicians from a wide range of non-genetics specialties to determine what they would do if faced with the complex decisions associated with cancer genetic testing, how their views compare, and how they align with current guidelines and data. Genetic counselors were significantly more likely than non-genetics physicians to bill their insurance for testing (94.9 vs. 86.8 %; p = 0.001) and purchase life insurance before testing (86.6 vs. 68.6 %; p = 0.000) and were less likely to use an alias (3.2 vs. 13.2 %; p = 0.000) or order testing on their own DNA (15.3 vs. 24.2 %; p = 0.004). They were also less likely to test their minor children (0.9 vs. 33.1 %; p = 0.000) or test their children without their knowledge and consent/assent (1.4 vs.11.5 %; p = 0.000). The results of our study indicate that there is wide variation regarding what clinicians predict they would do in the areas of ethical, legal and psychosocial issues in cancer genetic testing. Cancer genetic counselors’ choices are more aligned with professional guidelines, likely due to their experience in the field and awareness of current guidelines. These data are a starting point for a broader discussion of who should offer cancer genetic counseling and testing to patients, particularly as the complexity of the available testing options and associated issues increase with whole exome sequencing.
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Acknowledgments
This study was supported by an unrestricted grant from Intellisphere. Intellisphere had no role in the design of the study, interpretation of the data, or preparation, review, or approval of the manuscript. They have no access to the data and will not until it is presented and/or published. They provided us with access to the services of another company which they own (Healthcare Research & Analytics (HRA)) for the collection, management, and basic initial analysis of the data. All formal analysis was conducted by our own team members, who are not affiliated with this company.
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Brierley, K.L., Bonadies, D.C., Moyer, A. et al. “Would you test your children without their consent?” and other sticky dilemmas in the field of cancer genetic testing. Familial Cancer 13, 345–350 (2014). https://doi.org/10.1007/s10689-014-9723-6
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DOI: https://doi.org/10.1007/s10689-014-9723-6