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Genetic testing and discrimination in Canada

Informed decisions are important when it comes to genetic testing, but Canadians don’t always hear the full story.

Today’s Global News report on “Home genetic testing” appears to be little more than an infomercial for the company selling the mail-in genetic test.  The reporter claims that this test is beneficial to those WITHOUT health insurance.  There is no discussion why the protocols for genetic testing are so rigorous, requiring counselling, waiting periods and other safeguards.  Nor do they mention that once you have the results, you may be unable to find insurance, even non-health insurances.  They do not mention that you may be fired so that you don’t burden the group health plan.  They do not mention that Canadians are the only G8 citizens without protection against genetic discrimination.  Granted, this is a short piece, but I question whether it falls in line with Global News Journalistic Principles and Practices which begins with “Our primary directive is to report accurate, balanced, timely and comprehensive news and information in the public interest.”

On this same day, I also watched the Huntington Society of Canada’s TV advertisement urging protection against genetic discrimination.  This is part of their campaign for Huntington Disease Awareness Month (May.)  The  message:

Do You Really Want to Know?

MY REALITY… I have a 50% CHANCE of inheriting Huntington disease and my genetic test results will tell my fate.

CANADA’S REALITY… Genetic testing is available to all Canadians. WE ARE ALL AT RISK of our genetic information being used against us in Canada. Canada is the only G8 country that DOES NOT PROTECT its citizens from genetic discrimination.

 

What is Genetic Discrimination?

Genetic discrimination occurs when people are treated unfairly because of actual or perceived differences in their genetic information that may cause or increase the risk to develop a disorder or disease.

Genetic information is complicated and should not be used against us. This type of discrimination affects more than just those with Huntington disease, we are all at risk.

Every family has disease hidden in their genetics, so this affects every Canadian.  Take the time to learn about this important issue and to inform your federal and provincial representatives.

Some genetic discrimination resources:

Canadian Coalition for Genetic Fairness

Huntington Society of Canada

USA’s Genetic Information Nondiscrimination Act (GINA) of 2008

Related articles:

Angelina Jolie highlights benefits of genetic testing; But Canadians lack the protection Americans have against genetic discrimination. Press release by CCGF

Young woman faces insurance hoops due to father with Huntington’s

previous posts on Genetic Discrimination

HSC National Conference News

Toronto is hosting this year’s HSC National Conference.  If you are not attending, follow along on social media:

Twitter: Web:
#HSCTO2012 Huntington Society of Canada National Conference, Toronto 2012
#YPAHDDAY2012

 

Young People Affected by HD Day at HSC National Conference 2012
@HuntingtonSC Huntington Society of Canada
@CureHDCalgary HSC Southern Alberta Chapter
@HDBuzzFeed HD Buzz
@YPAby_HD Young People Affected by HD
@HDYOFeed HD Youth Organization
@Huntingtons_Doc Do You Really Want to Know? documentary film
@GeneticFairness Canadian Coalition for Genetic Fairness