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    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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    Karl Lottes, MA, RSW

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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


15% of world population disabled

The United Nations’ World Health Organization (WHO)  and the World Bank have collaborated on the first ever World Report on Disability.

From the factsheet:

Disability prevalence is high and growing. There are over one billion people with disabilities in the world, of whom between 110-190 million experience very significant difficulties. This corresponds to about 15% of the world’s population and is higher than previous World Health Organization (WHO) estimates, which date from the 1970s and suggested a figure of around 10%. The prevalence of disability is growing due to population ageing and the global increase in chronic health conditions. Patterns of disability in a particular country are influenced by trends in health conditions and trends in environmental and other factors –such as road traffic crashes, natural disasters, conflict, diet and substance abuse.

From the full report:

Disability and human rights
Disability is a human rights issue because:

  • People with disabilities experience inequalities – for example, when they are denied equal access to health care, employment, education, or political participation because of their disability.
  • People with disabilities are subject to violations of dignity – for example, when they are subjected to violence, abuse, prejudice, or disrespect because of their disability.
  • Some people with disability are denied autonomy – for example, when they are subjected to involuntary sterilization, or when they are confined in institutions against their will, or when they are regarded as legally incompetent because of their disability.

The report describes:

  • the global picture of disability;
  • health care;
  • rehabilitation;
  • assistance and support;
  • enabling environments (removing barriers);
  • education; and
  • work and employment.

In addition to more specific recommendations in each section, it provides the following nine broad recommendations:

1:  Enable access to all mainstream policies, systems and services
2:  Invest in specific programmes and services for people with disabilities
3:  Adopt a national disability strategy and plan of action
4:  Involve people with disabilities
5:  Improve human resource capacity
6:  Provide adequate funding and improve affordability
7:  Increase public awareness and understanding of disability
8:  Improve disability data collection
9:  Strengthen and support research on disability.

Full details are available on the WHO website:  http://www.who.int/disabilities/world_report/2011/en/index.html