Canada’s Parliament debates Bill S-201 to prohibit and prevent Genetic Discrimination

Bill S-201 was recently introduced in the Canadian Parliament by Senator James Cowan. This legislation seeks to prohibit and prevent people and organizations from accessing a person’s genetic test results and using this information to discriminate against them.  Specifically, the Act prohibits a person or company from requiring someone “to undergo a genetic test or disclose the results of a genetic test”. The Act also includes amendments to Canada’s Labour Code to protect employees as well as amendments to the Human Rights Act to prohibit discrimination based on genetic characteristics.

When ‘genetic characteristics’ are added to the Canadian Human Rights Act as a type of discrimination, then anyone who is in violation could face significant penalties.  A breach could result in a $1 million fine or up to five years in prison.

Genetic testing is increasingly being used by individuals to determine whether they carry a mutated gene or a pre-disposition for a particular disease in the hopes that early diagnosis can help in preventing and treating serious medical conditions, such as Ovarian Cancer, Breast Cancer, Huntington’s Disease and heart disease. Canada is currently the only G7 nation that does not protect genetic information.

While genetic testing brings hope in terms of preventing disease for many Canadians, the results of a genetic test, if made available, can have negative affects on a person's future.  For example, it be used to prevent people from qualifying for insurance or from obtaining health or life insurance at fair cost, and also, from getting jobs and promotions. Currently, when insurance companies calculate your eligibility for coverage, they look at your medical history and various other personal information to assess health risks.  Insurance companies cannot require you to get a genetic test; however, if you have already undergone a genetic test, this information is included in your ‘known’ health information and thus must be disclosed to your insurer.  Results could also potentially be used against family members applying for insurance.

Women who have family members who contracted breast or ovarian cancer may be at greater risk of also developing these cancers.  Once a woman reaches the age of 18, they can undergo a genetic test for BRCA1, which is a gene that increases the risk of ovarian and breast cancers.  Currently problematic for women who have tested positive for BRCA1 is that insurance companies have cut off claimants or charged much higher premiums when the genetic test results were disclosed.

Of course, insurance companies are opposed to Bill S-201. They argue that once a person has fully disclosed their health history and received insurance coverage, they cannot have their existing contract cancelled if they later undergo genetic testing that indicates a higher risk.  Also, the results of a genetic test do not impact eligibility under a group insurance policy, such as through an employer.

Yet, there have been many instances of genetic discrimination in Canada. Dr. Yvonne Bombard, a genomics scientist at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital in Toronto, conducted a Canadian study on genetic discrimination (as reported in the The Globe and Mail, April 11, 2016).  Her study revealed that about forty per cent of patients surveyed had experienced genetic discrimination.  In one case, a woman’s ex-husband used her genetic test results in an attempt to claim child custody.  Some people were denied promotions or offered early retirement.  One couple reported that they were denied an adoption due to the wife’s genetic status.  Some people stated that they remained in their job only because they were afraid they would lose benefits and not find another job.  Dr. Bombard noted that almost all insurance applications ask whether the family has a history of a genetic disease, of which Huntington’s disease is one example.  Yet, if a person withholds that they are aware of their genetic risk, the insurance company can cancel their insurance.

Many western nations currently use genetic testing as part of their patient care.  Like Dr. Bombard, the Chief of Clinical and Metabolic Genetics at the Hospital for Sick Children in Toronto, Dr. Ronald Cohn is in favour of Bill S-201. Dr. Cohn states that he is aware of a number of patients who did not undergo testing due to a fear of unfair treatment (The Globe and Mail, April 11, 2016).  Dr. Cohn added that he believes that “our genetic makeup is no one’s business” with the exception of our physician or another health care professional whose treatment we seek.  And patients should be able to choose with whom they would like to share their genetic test results.

As we move towards the future, it is likely that we will discover more and more disorders that have a basis in genetics and knowledge of the disorders to which individuals are predisposed can have a huge impact in terms of saving lives.   This is a convincing argument for supporting Bill S-201 to create an environment in which Canadians are free to undergo a genetic test without the fear that they will experience discrimination in employment, insurance or any other form.