A recent study conducted by researchers at the University of British Columbia has revealed extensive discrimination against Canadians by insurance companies based solely upon genetic profiling. The study, published in the June 10th edition of the British Medical Journal, found that more than 90% of insurance applications have questions regarding family history, questions that specifically include any history of Huntington’s Disease and other inherited neurological disorders. It is these questions, or rather the answers to these questions, that are being used by insurance companies to determine whether or not to insure an applicant.
The Study
The study consisted of 233 participants, all of whom had a family history of Huntington’s Disease. None of the participants had any symptoms of the disease. Of the group, 167 had been tested for the gene; 83 carried the gene and 84 did not. The remaining 66 participants chose not to be tested. Nearly 30% of the group – carriers or not, those tested and those not tested – had received “unfair treatment” by an insurance company which included denial of treatment, premiums so high as to make it impossible to obtain coverage, and forceful genetic testing. Discrimination was equal for those who tested positive for the gene and those who simply had a family history. The discrimination was based solely on perceived risk.
Government Policy vs. Privacy Advocates
Canada is greatly lagging behind in protecting its citizens from discrimination based upon genetic profiling. Most European countries have put in place some form of protection, and the US finally enacted the Genetic Information Nondiscrimination Act of 2008. However, the Act does allow for discrimination in the fields of disability, long-term care and life insurance. Apparently some forms of discrimination are still acceptable.
The Huntington Society of Canada, in conjunction with the Canadian Coalition for Genetic Fairness, is spearheading an initiative to move the federal government to pass legislation to protect the privacy of individual genetic information and to protect individuals from discrimination based upon genetic information. Canada’s current Charter of Rights and Freedoms does not protect individuals from discrimination based upon personal genetic information.
The Impact
The Canadian Life & Health Insurance Association states that the industry does not force testing on applicants, but has the right to require results of any tests that have been conducted. It is this that worries not only individual lay persons, who may then decide not to undergo testing for fear of not obtaining health insurance, employment, life insurance, disability, long-term care, etc., but also those who work as advocates in the fields of disease, researchers and those personally affected by genetic disorders. When individuals do not undergo genetic testing, research suffers. Potential treatments and even cures become harder to find, for the pool of genetic information is smaller. Insurance companies, employers, and other corporate bigwigs seek this very personal information that just a few years ago was not available in an effort to, once again, make or save money. Researchers and geneticists seek this information (that they discovered) in an effort to treat and cure disease.
*For an incredibly long list of information regarding genetics and privacy issues, go to http://biobanktalk.ca/readings/. If you have a personal experience of a breach of privacy regarding genetic information or genetic discrimination you’d like to share, email Parkinson Post, a non-profit for those dealing with Parkinson’s Disease, at general.info@parkinson.ca.
