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Advocacy

New Study Shows Canadians with HD Suffer Genetic Discrimination

With medical advances, Canadians can now learn whether they carry the genetic risk for devastating diseases. But that knowledge could come at a price, suggests a study that looked at the growth of "genetic discrimination."

The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington's disease. The children of Huntington's patients have a 50 per cent chance of developing the disease themselves, and doctors can further pinpoint that risk by testing for the Huntington's genetic mutation.

The UBC study surveyed 233 people across Canada -167 people who had been tested for the Huntington mutation (83 had the mutation and 84 did not), and 66 people who were at risk for the disease but had chosen not to have the genetic test.

They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.

About 15.5 per cent said they had experienced discrimination among family, particularly when making choices about having children, and 12.4 per cent among social settings, particularly by friends or when establishing a relationship.

"Discrimination in the family must be viewed through a wider lens that captures the profound impact the presence of Huntington's disease and predictive testing can have on the family system," the authors write. "Often when Huntington's disease is present in a family, it becomes part of a family's identity and pattern of behaviour."

There were also a few reports of discrimination in employment (6.9 per cent), health care (8.6 per cent), or public sector settings, such as from the courts or adoption agencies (3.9 per cent).

In total, 40 per cent of the respondents reported having experienced unfair treatment because of their risk of developing Huntington's disease, even though none had symptoms. A family history of the disease, rather than the genetic test result, was the predominant reason they gave for discrimination.

The results are published in the British Medical Journal. Click here to read the full study .

The findings could be significant to the many Canadians who undergo genetic testing to assess their risk for illnesses such as Huntington's or breast cancer. The test results help them make important decisions and to plan for the future, or to obtain preventative treatment.

But Dr. Yvonne Bombard, who led the study while she was a UBC doctoral candidate at the Centre for Molecular Medicine and Therapeutics, says patients need to be warned about the possibility for "genetic discrimination."

"The study provides useful information that genetic professionals can tell people when they are counseling them on obtaining genetic testing," said Bombard, who is currently doing a post-doctorate fellowship in public health genomics and policy at the University of Toronto.

"I would like to see society benefit from the effective translation of genomic discoveries while minimizing the risks such as the inappropriate use of these technologies or information."

Dr. Paul Billings, Director and Chief Scientific Officer for the Genomic Medicine Institute at California's El Camino Hospital, says that over the past two decades, "the explosion of human genomic information" has led to more opportunities for genetic discrimination.

"Dr. Bombard's study illustrates that we need continued research and improved public policy in order to create a safe society for knowing hereditary risks and acting on them appropriately."

Both Dr. Bombard and the principal author of the study, Dr. Michael Hayden, are members of the Canadian Coalition for Genetic Fairness, which promotes awareness and policy protections for genetic discrimination issues in Canada.

 

Media Coverage

Jun 10 2009

Genetic Discrimination Advocacy

Canadian Coalition for Genetic Fairness

The Huntington Society of Canada has been instrumental in establishing the Canadian Coalition for Genetic Fairness (CCGF), an advocacy-based organization urging the Canadian government to develop and implement a “made in Canada” strategy designed to eliminate this form of discrimination. Don Lamont, CEO & Executive Director of the Huntington Society of Canada serves as Chair of the Coalition.

Though other countries have taken important steps towards eliminating genetic discrimination, Canada is falling behind. But CCGF is working hard to bring a necessary level of privacy and protection to Canadians, aiming to ensure that genetic data is used properly without fear of repercussion. The new strategy would prevent employers and insurers from pushing applicants to take genetic tests or using genetic information or family histories for the purpose of assessing the applicant’s risk of becoming disabled at some point in future.


Advocacy

The time to start actively pressing our federal government to protect its citizens against genetic discrimination is now!  This is an important issue, not only to those of us associated with Huntington disease, but other similar non-profit organizations fighting for change. 

In Canada, we have certain rights guaranteed under the Charter of Rights and Freedoms and the Canadian Human Rights Act. The Act is designed to protect Canadians from discrimination based on ethnicity, gender, disability, religion, sexual orientation and several other factors. But what it doesn’t address is discrimination against people based on a genetic predisposition to a particular disease. For example, when applying for insurance in Canada, you will be asked if you or a family member has HD and, as a result, will be asked about genetic test results. The results of the genetic test will prevent people living with HD from getting insurance because of the prospect of a future disability, even if you don’t have symptoms today. That’s genetic discrimination and HSC wants to stamp it out. 

HSC is trying to persuade the government to provide protection for people who may develop a disease based on their genetics and may face future disability. We want those people to have access to insurance and employment to be able to take care of their families. We want the creation of legislation that makes sense for Canadian citizens and the industry alike. We are committed to championing this cause and part of our efforts include partnering with other groups who are interested in working together to create a bigger voice.

In May, U.S. President George Bush signed the Genetic Information Nondiscrimination Act (GINA), protecting Americans against discrimination based on their genetic information when it applies to health insurance and employment. This has been accepted at the federal level and the individual states are following suit by adopting similar legislation. In Canada, we’re looking closely at European laws since we share greater similarities in terms of our health-care system when compared to the U.S.  Several European countries have also taken steps to protect their citizens against discrimination through human rights legislation or specific regulations stated in their insurance laws.
 
Genetic discrimination has fallen off the Canadian government’s radar. GINA has provided us with a catalyst to push for protective legislation in our own country, side by side with other organizations that have expressed interest in moving forward on a broad-based advocacy project.  It’s crucial that the government understand the breadth and depth of this issue – it’s not just a Huntington disease issue; if you have genes, it’s your issue.

Thanks to the human genome project, more information is being revealed about human genetics each day and the impact will be felt by everyone. Who among us will be able to say: “I have a perfect set of genes. Please give me life insurance or disability insurance.” The ramifications are staggering.

Insurance companies are not covered under human rights legislation. In fact, insurance decisions are based primarily on discrimination. For example, if a customer walked into a bank for the purpose of refinancing his mortgage and answered honestly on his application that there was a history of HD in his family, he would be turned down for mortgage insurance. There would be no opportunity to explain that he had undergone genetic testing and was proven to be gene-negative.

Even those who test positive may be asymptomatic for years or even decades. By that time, they may have retired, paid off their mortgages or could have died due to unrelated causes.  In those cases, that insurance that was denied would never have been needed.

This kind of advocacy doesn’t happen overnight. It won’t be a quick process, but the more information we gather and the more connections we build, the more effectively we can push for legislation from our federal government.  We’ll keep you updated as we move forward. Visit the HSC website for the latest news in our campaign for change.