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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


Family curse. BBC story on genetic testing for breast cancer.


To Test or Not to Test?

The May/June 2011 issue of Alberta Health Service’s Apple magazine includes an article by Dawna Freeman on genetic testing.  It features Tara Johnson-Ouellette’s journey through genetic testing for Huntington disease after her mother’s diagnosis.

Here are a few excerpts:

Genetic testing can reveal if you have one of the 3,000 genes linked to diseases. But the bigger question is would you want to know?

The decision to be tested for a genetic disorder, such as hereditary cancer or Huntington’s disease, is not to be taken lightly, says Deepti Babu, a genetic counsellor at the University of Alberta in Edmonton. “Predictive genetic testing is much more than a blood draw.  There are implications that can be far-reaching, and these can have a ripple effect on family members.”

While the decision to test is yours alone, the results can affect your entire family.  “Genetic testing does not just reveal information about an individual.  It reveals information about a whole family,” says Dr. Victoria Seavilleklein, who works at Red Deer Regional Hospital Centre as a clinical ethicist for Central Zone of Alberta Health Services. “If an individual were found to be a carrier, that would tell you that at least one of the parents was also either a carrier or actually had the condition, and would have implications for the parents and siblings.”

Read the full article:  Apple magazine To Test or Not To Test  Note that there is a typo near the end of the article:  Tara was not tested for Parkinson’s.  It should read Huntington disease.

Apple magazine website:  http://www.albertahealthservices.ca/apple/

BBC accompanies Nancy Wexler to Venezuela

A BBC story and video from Aug 2010.

Venezuelan village key in search for Huntington’s cure.

The village of Barranquitas in Venezuela has the highest concentration of Huntington’s disease, a devastating brain condition, in the world. The BBC’s Will Grant accompanies a US scientist there as she continues her life’s work to find a cure.

story:  http://www.bbc.co.uk/news/world-latin-america-10952800

video:  http://www.youtube.com/watch?v=D6LbkTW8fDU&NR=1

Geneticists’ opposition to direct-to-consumer genetic tests

UK registered charity PHG Foundation (associated with the Public Health Genetics Unit) is advocating against direct-to-consumer genetic tests.  They argue that genetic tests require the involvement of medical professionals to ensure that individuals understand and can act based on the true risks identified by the results.  Read the PHG article here:  http://www.phgfoundation.org/news/8708/

What the article doesn’t discuss is the counselling process which is so important during the ENTIRE process – prior to making the decision to test, while waiting for results, upon receipt of the results, and afterwards.  In the case of Huntington disease, there are many emotional and practical (career, financial, insurance) considerations.  Complicating these issues, one individual’s test can impact many other members of the family.

The Huntington Society of Canada has many publications online, including Genetic Testing and Personal Perspectives on Genetic Testing.

Testing involves education and counselling about
the implications of the test by someone with appropriate
expertise, such as a genetic counsellor or medical
geneticist. A neurological examination may also be
performed. Individuals with symptoms may discuss
testing with a neurologist. A person with depression,
changes in behaviour, or psychiatric illness should also
be seen by a psychologist or psychiatrist.

These publications are worth reading if you are considering genetic testing.

Melissa Lingard interviewed on CBC’s The Eyeopener

Running for Huntington disease

We meet a Calgary woman who used the Calgary marathon to raise awareness about Huntington disease.