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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


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

On the Shoulders of Giants…

Happy Birthday Woody Guthrie!

Perhaps the most famous person to openly suffer from Huntington disease, Woody would have been 99 years old today.  Unfortunately, his life was cut short at age 55 by HD in 1967.  For those too young to know, Woody was an extremely popular, politically active singer-songwriter, best known for the song “This Land is Your Land.”

More significantly for the HD community is the fact that his widow, Marjorie Guthrie, went on to found the Huntington’s Disease Society of America (HDSA) and, in conjunction with Ariel and Ralph Walker founders (in 1973) of the Huntington Society of Canada (HSC) , began to build the international research and support community we see today.  In California, Milton Wexler founded (in 1968) the Hereditary Disease Foundation (HDF) after his wife Leonore’s diagnosis with HD.

“If I have seen further it is only by standing on the shoulders of giants.”  Sir Isaac Newton

From the kitchen tables of these hard working visionaries and selfless leaders, their legacies are the organizations we now know as HDSA, HSC and HDF.   Ralph’s wife, Ariel Walker, continues to actively advocate for HD families through HSC.  Milton and Leonore’s daughter Nancy Wexler, neuro-psychologist and HDF president, led the 20-year study of the 18,000 family members in Venezuela that helped identify the gene marker and gene for HD in1983 and 1993 respectively.  Another daughter, author Alice Wexler has written about and advocated extensively for HD research and families.

Out of necessity, the HD community has pioneered many things and continues to have ripple effects far beyond HD families:

  • Perhaps because they didn’t know better, or perhaps because they did, the HD research community has fostered a spirit of collaboration unprecedented in the often-competitive field of medical research.
  • New technologies developed during the HD gene search have been widely used in mapping genes for other disorders including cystic fibrosis, Parkinson’s, Alzheimer’s, cancer, heart disease and mental illness. These successes helped to launch the Human Genome Project.
  • The predictive testing protocol for Huntington disease has served as a model for other diseases.  With thousands of diseases known to have genetic links, this is becoming more and more important.
  • Much of of our fundraising is at the grass-roots level, conceived and run locally by volunteers.
  • HSC is actively leading the fight against genetic discrimination in Canada as a leader and founding member of the Canadian Council for Genetic Fairness.

Add to this, an enormous international research and support community and millions of volunteer hours spent fundraising, advocating and caregiving and it is no wonder we have come so far so quickly.  Yet there is still further to go.  Celebrate the past and embrace the hope for the future.

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/

Petition against genetic discrimination.

From unknown source on the care2.com petition website:

No Genetic Discrimination Against Canadians with Parkinson’s or Cancer

signatures: 23,610
deadline: July 8, 2011
signature goal: 30,000
overview letter
Target: Canadian Parliament
Sponsored by: Care2.com

Anyone who’s suffered from Parkinson’s disease or who’s watched a loved one suffer from Parkinson’s knows the devastation this illness can bring. It’s a movement disorder, and it impairs motor skills and can silence speech. In worst cases, it can render the sufferer completely unable to move.

The last thing anyone who has Parkinson’s or who is at risk for the disease should face is discrimination from insurance companies and employers. Genetic discrimination is a present and growing problem in Canada. It harms all citizens, especially those who have or who are at risk to develop diseases like Parkinson’s and it creates a crippling fear for everyone in the country. Some Canadians may delay or decline testing out of fear for how their insurance companies and employers may react if they are diagnosed with Parkinson’s or are found to be at risk.

The United States, the United Kingdom, Germany and most of the European Union have taken active steps to make sure people are not discriminated based on their likelihood of developing diseases like Parkinson’s, and it’s time Canada did the same. Urge the Canadian government to pass legislation to stop genetic discrimination.

“Sign” the online petition:  http://www.thepetitionsite.com/takeaction/472/222/220/

Canadian Coalition for Genetic Fairness: Who has perfect genes?

From iPolitics.ca:

Canada requires a genetic non-discrimination strategy to ensure genetic data is used properly without fear of repercussion. The Canadian Coalition for Genetic Fairness (CCGF) will work to win support for a strategy that would prevent insurers and employers from inducing applicants to take genetic tests and from receiving genetic information or family histories, for the purposes of assessing the liability of the applicant, based on imputed or perceived disability.

Federal and provincial privacy and human rights legislation is inadequate — it does not address the concept of “future disability,” or prevent discrimination in the first place. Rather, it offers remedies after discrimination has occurred; but it takes years and a major effort, and the fear of discrimination prevents victims from stepping forward to be knowledgeable about their own health, take preventative actions and treatments (e.g. personalized medicine) and participate in research opportunities. And genetic discrimination is happening to Canadians. In 2009, a University of British Columbia study showed that insurance companies, employers and other organizations are discriminating against individuals with a family history of Huntington’s disease.

Read the full article:  http://ipolitics.ca/2011/06/06/canadian-coalition-for-genetic-fairness-who-has-perfect-genes/