29 January, 2018 07:00
Photo : Freepik
Since the adoption of the act, federal S-201, genetic discrimination is prohibited in Canada. The all pleases a specialist from McGill University, who says, however, not be completely reassured by the practices of the insurers.
Yann Joly is a lawyer and director of research at the Centre of genomics and policy, Department of human genetics ofMcGill University. He is afraid that the insurers are based on other information, such as family history, to refuse to take patients considered to be at risk at the genetic level. Mr Joly, who has received the Merit Innovation of the Barreau du Québec in recognition of its work on the right to privacy in the biomedical domain, is expressed on this topic at the first Symposium Risk for hereditary cancer held in Lévis, on the 24th of November.
Widespread to what point ?
In itself, it is not illegal to discriminate in Canada, » he recalls. The law allows some discrimination and prohibits certain forms. In the insurance sector, it enables, in particular, impose a higher rate according to age and sex, for example to a driver of 20 years who gets a sports car. At the social level and at the level of the right, it forbids a landlord to refuse to rent an apartment to a woman under the pretext that she is pregnant.
According to a study of the case law, although canadian courts have not yet had to specifically address genetic discrimination, this does not mean that such form of discrimination is not practiced. It is still not known to what extent genetic discrimination is widespread in Canada, or indeed elsewhere in the world. There are very few studies and robust on the topic, which meet the scientific criteria, regrets this researcher.
A study of genetic discrimination involving the insurance sector has been carried out by the researcher Yvonne Bombard. She involved patients and people of their families who were suffering from Huntington’s chorea. An individual who carries the gene will develop the disease. Huntington’s disease is incurable and usually results in death 15 to 20 years after the onset of symptoms. The study demonstrated that there was genetic discrimination and that the carriers of the gene were often denied by insurers.
Even if it would be very common, genetic discrimination, however, raises a lot of concerns in the population. A survey conducted across Canada in 2013 by the firm, Phoenix Strategic Perspectives has shown that more than 50 % of the people were said to be very worried if they were required to pass the genetic tests and that the results can be communicated to insurers or employers.
The level of fear was such that more than 60 % of the respondents indicated that they do spend may not be of genetic tests, even if asked to do so for their health. This attitude shows that in the area of genetic discrimination, the fears would be stronger than the facts.
«It is extremely unfortunate. People who have medical decisions to make should not be prevented from doing so in a free and informed by these questions, » said Mr. Joly. Genetic discrimination is a source of anxiety, discomfort, and even depression. It can unfortunately have a negative impact on genetic research and on the response to tests ordered by a doctor «.
Genetic testing would become a mine of information for the insurance industry, agrees with Mr. Joly. «We can understand the point of view of an insurer who wants to know the state of health of a patient in order to know in which group he is going to classify it : the people most at risk, or a risk normal or low «.
Bill S-201, adopted, and sanctioned a year ago, stipulates that no person may require a person to undergo a genetic test as a pre-condition to the supply of goods or services, to the conclusion or continuation of a contract or an agreement, or the offer or to the maintenance of specific terms in a contract or an agreement. No one can no more compel a person to disclose the results of a genetic test that she has already suffered. The act prohibits anyone from collecting, using or disclosing the results of a genetic test without his or her written consent.
Not completely reassured
Mr. Joly, however, is not 100% satisfied with the text of the federal law. «This is good news, but with one caveat, he commented in an interview in the Journal of the insurance. The law prevents insurers from requesting genetic test results. Even if the people give the results of a voluntary basis, the insurers will in general refuse to take «.
«There’s no need to shout, hallelujah,» he adds. It is a definition and a concept of genetic test that are defined in the act. The family history of cancer is still required by insurers. They expect to have this information as any other information of a medical nature. It should not be forgotten that the protection of the law privacy is important. This means that we always have the choice to share or not, at the risk of being refused by an insurer. We must give our consent. «
The lawyer is therefore concerned that the industry cannot do directly it cannot do indirectly by means of genetic testing. For this reason, he hoped that the government of Quebec appoints an agency to respond to the action of genetic discrimination and to receive complaints. He referred to the quebec Commission of human rights or an Observatory of the genetic discrimination.