Ida Ngueng Feze and Yann Joly Pages 56 - 64 ( 9 )
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.
Canada, DTC, genetic discrimination, genetic information, health data, life insurance, privacy.
, McGill University, Faculty of Medicine, Department of Human Genetics, Centre of Genomics and Policy, 740 Dr Penfield, Suite 5200, Montreal, QC H3A0G1, Canada.