Genetic discrimination, a widespread phenomenon or not?

La discrimination génétique, un phénomène répandu ou pas?

Photo: Jeff Pachoud Archives Agence France-Presse
The “genetic discrimination” has attracted a lot of ink last year when a senator has managed to enact a law prohibiting employers from requiring a genetic test as a condition of employment.

Genetic discrimination is very common ? Quebecers are concerned-they and are they aware of the new law — challenged — to the curb ? These are the questions to which attempts to answer the professor montreal Yann Joly by launching an online consultation on the subject.

“We don’t have a lot of data on the phenomenon, and the few studies that do exist internationally are not all of great quality “, explains in an interview with The Duty of the director of research of the Centre of genomics and policy affiliated with the McGill University. “The only study of quality and scope in Canada is very limited application because it only covers people who have the gene for Huntington’s disease. “

Mr. Joly has therefore set up an online forum where he publishes informative texts on the subject and invites the citizens to indicate what they think.

“When we say “discrimination”, the reflex is to say that you don’t want. But what is the problem that we try to counter it ? He should be thinking about before developing a solution. It is as if we had completely missed this step, ” says Mr Joly.

The “genetic discrimination” has attracted a lot of ink last year when a senator has managed to enact a law prohibiting the insurance companies and employers from requiring a genetic test as a condition of contract or hiring, or demand to see the results of tests already passed.

The bill was a response to the medical community, who complained that patients refuse to take tests, that would help, however, to better understand their treatment, for fear of not being insurable.

It had been adopted, thanks to the backbenchers, despite the opposition of the Trudeau government, which believes it is unconstitutional, because it belongs to the scope of the provinces. The law is now the subject of a challenge by Quebec.

The forum of M. Joly, which was launched a few days ago only, has been visited by about 200 people, but only a few have expressed their point of view. Even he acknowledges that it is a “challenge” to connect people, it feels normal the pace of its project.

“I don’t expect there to be more than 50 or 200 people who comment. It is not necessary to expect that there are 5000 or 200 000. Statistically, this will be sufficient for the results to be reliable. “

The forum launched by Mr. Joly is part of a broader project of observatory of genetic discrimination, a Internet site in development aimed at monitoring the evolution of the phenomenon. To the extent that the funding requested will be received, Mr. Joly in numerous features.

One of these objectives is to collect testimonies from people who feel that they have experienced genetic discrimination in order to quantify the phenomenon.

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