Can't Always Get What you Want? Try an Indirect Route you Just Might Get What you Need: A Study on Access to Genetic Data by Canadian Life Insurers
Ida Ngueng Feze and Yann Joly
Affiliation: McGill University, Faculty of Medicine, Department of Human Genetics, Centre of Genomics and Policy, 740 Dr Penfield, Suite 5200, Montreal, QC H3A0G1, Canada.
Concerns about genetic discrimination (GD) have been reported since the 1980s. The potential chilling effects
of GD both in the clinical and research settings have prompted the adoption of a myriad of laws and moratoria on access
to genetic data in Europe and the United States. Recent studies in Canada, Australia and Germany concerning patients and
family members at-risk for Huntington’s disease have raised concerns about GD and life insurance. However, broader
empirical evidence on the occurrence of GD (ex. involving complex genetic disorders in the context of personalized medicine)
remains scarce. This study identifies the information that Canadian life insurers request in their primary proposal
forms. 21 forms from different insurers, available online, were assessed to determine 1) whether insurers are explicitly or
specifically requesting genetic information from applicants, 2) whether insurers are using open-ended questions in a way
that may compel the broad disclosure of personal information, and 3) what type of authorization is requested from applicants
to enable insurers to verify the accuracy and completeness of the information submitted on the form. Our findings
show that Canadian life insurers do not explicitly request that applicants disclose their genetic test results on insurance
questionnaires. However, their use of broad terminology and open questions, provide them access to a wealth of medical
information (including genetic test results) in addition to family history of diseases. Both the breadth of information currently
being collected through their proposal forms and the lack of standardization across insurance groups raise concerns
about the equity, transparency and overall coherence of the process. Although the findings have to be interpreted in the
context of the inherent limitations of this type of study, they carry important consequences for the translation of personalized
medicine which requires and generates a wealth of genomic information for patients.
Keywords: Canada, DTC, genetic discrimination, genetic information, health data, life insurance, privacy.
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