Why we need a law to prevent genetic discrimination

Consider this scenario: Your child is suffering from a potentially fatal disorder. After several arduous months of searching for an answer to its cause, you are offered a genetic test. This test may give doctors a clue to explain the illness and help treat it.

But there is a risk. The same inherited DNA information that could save a life might in some situations also be used against your child, yourself and relatives by third parties, such as insurers and employers. This is referred to as genetic discrimination.

If you are anything like the many people we have spoken with, you are probably surprised to learn that access to – and use of – your genetic information is currently not protected by legislation in Canada. As a result, people decline genetic testing even when the results might guide their best-practice treatment.