• Enter your email address to subscribe to this blog and receive notifications of new posts by email.

    Join 37 other followers

  • Chapter

    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.

    Check out our Wish List.

             

    We also work closely with HSC's Resource Centre Director.

  • Resource Centre

    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

  • Huntington Society of Canada

            

  • HD Buzz

    HD research news.  In plain language.  Written by scientists. For the global HD community.

  • Meta

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

Advertisements

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

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.

Caffeine makes Huntington’s symptoms start earlier?

From HDBuzz

Recent news stories suggest that Caffeine might be harmful to people with the Huntington’s disease mutation, while others claim that Cannabis might be helpful. Here’s the lowdown on the science behind these stories, and why we think that a third ‘C’ – Caution – might be the best medicine when it comes to news stories about HD ‘breakthroughs’.

Read the full article:  http://hdbuzz.net/37

Mary Lou Nicolson Klimek letter to families and friends

July 5, 2011

Dear Friends,

I’m sending this letter to let you know I will be ending my work as the HD Research Coordinator on July 31, 2011. It has been a rewarding 27 years working with you and your families. You have taught me so much as you shared your lives with me. I will remember you always for the wonderful folks you are and the dedication you and your families have given to help fight this disease.

This is a good time for me to move on as the Pharos, Predict and Cohort studies have now ended. Enroll-HD (the continuation of Cohort) will commence this fall, and you will be contacted by my replacement to ask if you will continue.

Carol Pantella will be continuing with her HD Drug Study Research  (2-CARE) so she will always be a good resource person for you.

I am continuing my interest in genetic research at the U of C, but with another investigator in another field.

I leave you with a heavy heart, but with many good memories. I wish you well, my friends. I hope our paths will continue to cross.

With many thanks,

Sincerely,

Mary Lou Nicolson Klimek

A Step Toward Controlling Huntington’s Disease?

From Johns Hopkins Medicine press release:
Johns Hopkins researchers identify a potential new way of blocking activity of gene that causes HD

Johns Hopkins researchers have identified a natural mechanism that might one day be used to block the expression of the mutated gene known to cause Huntington’s disease. Their experiments offer not an immediate cure, but a potential new approach to stopping or even preventing the development of this relentless neurodegenerative disorder.

Read the full news release:
http://www.hopkinsmedicine.org/news/media/releases/a_step_toward_controlling_huntingtons_disease

Website launch gives stem-cell research a boost

By Carolyn Abraham

From the Globe and Mail:

At first click, and even after several more, a new science website might seem simply to be a slick multi-media hub to school the public on stem-cell biology and research.

But joinstemcellcity.com, a creation of the McEwen Centre for Regenerative Medicine launched with great fanfare Wednesday in Toronto, has a much grander aim. It is intended to rally enough public support that the progress of stem-cell science will not be slowed by political chill or poor funding.

Read the full article:  http://www.theglobeandmail.com/life/health/new-health/health-news/website-launch-gives-stem-cell-research-a-boost/article2062686/

Neurology is one of the five branches of research focus at the McEwen Centre for Regenerative Medicine.