By Sue Newell
In light of recent discussions about people with celiac disease having problems getting life, mortgage and extended health care insurance, CCA Secretary Mark Johnson sent me a series of articles discussing the issue of legislation to protect Canadians’ genetic rights (Globe and Mail, December 10th, 2012).
In terms of celiac disease, this might affect people who do not currently have celiac disease, but choose to be tested for the DQ2 and DQ8 markers which indicate that they have the potential to develop celiac disease at some time in the future. (Remember that 30 to 40% of the general public carries one or both of these markers but only about 1% develop celiac disease.)
In Canada, the Human Rights Act does not protect from discrimination because of genetic information or perceived future disability. Bev Heim-Meyers pointed out the following.
“Genetic discrimination is a reality in Canada, as this scenario–a real example–illustrates. There’s no way of knowing how widespread it could eventually become, but one thing is clear: It is already an issue within the insurance industry. Although Canadian insurers have declared a moratorium on requesting genetic tests to qualify for life insurance, they can still deny coverage to individuals with a family history of a condition: They cannot tell applicants to take a test, but they can ask for proof that they are free of risky mutations before issuing a policy.
“As a result, a young father living a healthy lifestyle was recently denied life-insurance coverage because of a predisposition to celiac disease; a young, healthy male was denied critical-illness insurance because his father had been diagnosed with Parkinson’s disease that could be hereditary.
“Examples of other types of discrimination, such as employers using genetic information to screen employees or job applicants, have not been well-documented in Canada, but the risks are clear.”
In a companion article suggesting that Canada does not need anti-genetic discrimination laws, Yann Joly wrote:
“From an ethical perspective, there is no justification for treating genetic information differently than other types of health information. Why should people have to declare risk factors such as high cholesterol levels or HIV-positive status to their insurers but not mutations in genes like BRCA1 and BRCA2, which are associated with a higher risk of breast cancer? Separating genetic information from other types of health information in law could promote the erroneous belief that most genes are the sole causes of disease (true for only a very small minority of diseases). The adoption of this practice could actually reinforce the stigmatization of genetically at-risk individuals.”
As genetic testing for some of the genes contributing to celiac disease becomes more common in Canada, especially by parents of children who might develop celiac disease, these issues deserve careful consideration and discussion before testing takes place.
Editors note: As a full member of the not-for-profit Canadian Celiac Association, you’ll receive email updates like this as well as a quarterly magazine. Don’t sit on the sidelines. Ensure you annual charitable giving includes a membership in the CCA to keep Celiac disease on the agenda and deal with policy issues like this.