Canadian genetic healthcare professionals' attitudes towards discussing private pay options with patients.

Vanessa Di Gioacchino,Alison M Elliott,Sylvie Langlois

doi:10.1002/mgg3.572

Abstract

BackgroundJust as there is inconsistency with respect to coverage of genomic testing with insurance carriers, there is interprovincial discrepancy in Canada. Consequently, the option of private pay (e.g., self pay) arises, which can lead to inequities in access, particularly when patients may not be aware of this option. There are currently no published data regarding how the Canadian genetics community handles discussions of private pay options with patients. The purpose of this study was to assess the attitudes of genetic healthcare professionals (GHPs: medical geneticists, genetic counselors, and genetic nurses) practicing in Canada toward these discussions.MethodsAn online survey was distributed to members of the Canadian College of Medical Geneticists and the Canadian Association of Genetic Counsellors to assess frequencies, rationale, and ethical considerations regarding these conversations. Quantitative data were analyzed using descriptive statistics.ResultsOf 144 respondents, 95% reported discussing private pay and 65% reported working in a clinic without a policy on this issue. There were geographic and practice‐specific differences. The most common circumstance for these discussions was when a test was clinically indicated (e.g., but funding was denied) followed by when the patient initiated the conversation. The most frequently discussed tests included: multi‐gene panels (73% of respondents), noninvasive prenatal testing (62%), and pre‐implantation genetic diagnosis (58%). Although 65% felt it was ethical to discuss private pay, 35% indicated it was “sometimes” ethical.ConclusionWith the increasing availability of genomic technologies, these findings inform how we practice and demonstrate the need for policy in this area.

Highlights

In Canada, healthcare services are publicly funded and the coverage of “medically necessary” services is mandated by the Canada Health Act (CHA) (Government of Canada, 1985).healthcare falls under provincial jurisdiction and the CHA leaves the interpretation of “medically necessary” to each provincial or territorial government (Stradiotto, 2007), leading to interprovincial differences in covered services
This study provides insight into the decision‐making of genetic healthcare professionals (GHPs) with respect to discussing private pay options with patients, including the reasoning behind their decisions and any discordance that may exist with respect to the rationale regarding the dialog
The questionnaire utilized the phrase “private pay” to refer to any genetic testing that was indicated for the patient based on the GHP's clinical judgement and paid for by an entity other than the provincial government; it does not refer to direct‐to‐consumer genetic testing

Summary

Introduction

In Canada, healthcare services are publicly funded and the coverage of “medically necessary” services is mandated by the Canada Health Act (CHA) (Government of Canada, 1985).healthcare falls under provincial jurisdiction and the CHA leaves the interpretation of “medically necessary” to each provincial or territorial government (Stradiotto, 2007), leading to interprovincial differences in covered services. Medical genetics is not immune to the effects of these decisions and, as a result, some clinically indicated genetic testing may not be covered (Rogowski, Grosse, Schmidtke, & Marckmann, 2014). Patients may have the option to pay privately for these tests, either themselves or through extended insurance plans; not all patients may be aware of this. There are currently no published data regarding how the Canadian genetics community handles discussions of private pay options with patients. Results: Of 144 respondents, 95% reported discussing private pay and 65% reported working in a clinic without a policy on this issue. The most common circumstance for these discussions was when a test was clinically indicated (e.g., but funding was denied) followed by when the patient initiated the conversation. Conclusion: With the increasing availability of genomic technologies, these findings inform how we practice and demonstrate the need for policy in this area

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