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    President:: Elisha Chin
    We are volunteers raising funds and awareness for a treatment and ultimately a cure for Huntington disease. While this promising research is ongoing, we try to improve the lives of families affected by HD.

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    Southern Alberta Resource Centre
    Karl Lottes, MA, RSW

    102,  5636 Burbank Crescent SE, Calgary Alberta T2H 1Z6
    Westech Building

    Telephone: 403-532-0609
    Cell: 403-801-3459
    Fax: 403- 532-3952

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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

2011/08/18 – Community Consultation on Affordable Housing

You are invited by the Accessible and Affordable Housing Working Group of the Accessible Housing Society  to a community consultation promoting secondary suites as a housing option for persons with disabilities.

August 18, 2011

1:30 – 3:30 p.m.

CNIB

15 Colonel Baker Place NE, Calgary

RSVP 403-242-6672 ext 123

The Accessible and Affordable Housing Working Group was created to function as a catalyst for change, to educate, and to strategize on how our Calgary communities can best address the needs for adequate, appropriate, accessible and affordable housing. The working group is a diverse mix of people that includes individuals with lived experience; professionals involved in civic, social service and housing issues; representatives from the private sector; and people from the community at large – all dedicated to the expansion of affordable and accessible housing in our Calgary communities.

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.

Listen to Help 4 HD podcasts

Melissa Biliardi interviews caregivers, family members, researchers, clinicians, social workers, advocates, film makers, fundraisers and organizations on her weekly podcasts.  You can subscribe via iTunes or another podcasting software, or listen to live and historical episodes online at http://www.blogtalkradio.com/help4hd.

The next episode (Monday June 6, 2011) will feature researchers leading the CREST-E (creatine) clinical trial.

Among many others, past guests include:

  • Dr. Robert Pacifici, Chief Scientific Officer from CHDI Foundation.
  • Dr. Ira Shoulson, one of the founders of both the Parkinson Study Group and Huntington Study Group.
  • Lauren Holder, author of When Given Lemons… and HD advocate fighting for the HD Parity Act in the U.S..
  • Mike Ratel, Producer/Director of “On Your Mark, Get Set Mow”, a movie about mower racing and raising mow money for Huntington Disease.
  • Dr. LaVonne Goodman’s husband died of HD at age 36.  She discusses how she helped a Seattle clinic recruit patients with HD for trials.