Genetic Discrimination: A Reality for Both Residents and Immigrants
Genetic Tests Used by Both Insurers and Immigration Officers
Montreal resident Harriet Smith* was in her mid-thirties in 2013 when she got tested for BRCA1 gene mutation for the first time. A pseudonym has been used to protect her employment opportunities and her children from accessing insurance.
The BRCA1 and BRCA2 genes are responsible for producing proteins that prevent the development of tumors. A mutation in one or both genes can increase the likelihood for women to get breast cancer dramatically. Smith’s family has a history of cancer: her mother had died of breast cancer in her forties. The results soon came in, and were positive. Smith was at a higher risk of getting breast, ovarian and endometrial—uterine—cancer than average. She had in fact around a 60 per cent risk of developing the disease.
Smith decided to take action. She underwent a preventive double mastectomy (the removal of both breasts) and a preventive hysterectomy (the removal of the uterus, and in her case her ovaries) in 2014, reducing her risk of getting breast, ovarian, and endometrial cancer to around one per cent. In other words, she now has the same risk of getting cancer as the average Canadian.
“I am more healthy than most since I can’t get breast cancer or a cancer of the uterus,” she said.
Smith first received life insurance when she and her husband bought their first house in 2011. She had not been tested for the BRCA genes at the time, and had no problem getting insured at MIB Group, Inc.
When Smith and her husband bought a new house, they both decided to change insurance plans to cover larger costs. While her husband had no problem finding a life insurance plan, Smith was refused by many providers. In the summer of 2014, she applied to get a new plan at MIB. They refused to insure Smith due to her gene mutation, regardless of her surgeries.
Smith eventually found a life insurance plan at Desjardins, however, the contract stated she would not be covered if she developed, “a cancer diagnostic or a benign brain tumor.”
It was difficult for Smith to find a disability insurance in 2015. Her only option was to accumulate multiple small insurances so she could get a monthly allowance in case she had to stop working suddenly. “I thought it was weird, because I am healthy, I don’t drink, I don’t smoke, I don’t have heart problems,” she said.
The Genetic Non-Discrimination Act became law in Canada on May 4, 2017. The act prohibits insurance companies, schools, adoption agencies, employers, and other third-parties from requiring genetic test information in a contract negotiation.
Quebec’s government challenged the constitutionality of the act arguing it infringes on insurance regulations, which is a provincial jurisdiction. It was referred to Quebec’s Court of Appeal. The verdict on the law’s constitutionality will be known on Dec. 12. Should it be overturned, it will likely be referred to the Supreme Court of Canada.
Bev Heim-Myers, the chair of the Canadian Coalition for Genetic Fairness, has fought for eight years to pass this law, and hopes that it will not be overturned in December. She was the CEO of the Huntington Society of Canada until she realized many were not seeking genetic testing for Huntington’s disease, a hereditary brain disorder that causes the progressive death of brain cells.
“The Huntington Society wanted to experiment a new treatment for Huntington’s disease but only a few people came forward because genetic tests could be accessible,” Heim-Myers said. Because of the risk of getting sacked by their insurance, people suffering from Huntington’s disease refused to come forward to test a possibly life-saving treatment, said Heim-Myers.
“When you signed an insurance contract, insurance companies went to your family doctors who were basically forced to give them the information because otherwise you could not get an insurance contract,” continued Heim-Myers.
However, genetic discrimination does not only apply to insurance companies—employers, schools, and many other third-parties can inflict unjust treatment on people because of genetic tests, said Heim-Myers.
Yvonne Bombard, a researcher at the Institute of Health Policy of the University of Toronto, conducted research on genetic discrimination in the context of Huntington’s disease. She reported in 2009 that 29.2 per cent of the 233 Canadian respondents who tested positive or are at risk of having Huntington’s experienced genetic discrimination in insurance. Along with that, 15.5 per cent reported discrimination in their families, and 12.4 per cent in social settings. Genetic discrimination by employers was only rarely experienced by people who were tested or at risk for Huntington’s disease, but is still a problem. Hence the importance of the Genetic Non-Discrimination Act.
Heim-Myers does not lack examples of people having suffered from genetic discrimination, and she said one in particular haunts her. In 2016, a young man living in Ontario was 22 years old when he got tested for the Huntington Disease mutation because of his family history. She said he shared with his employer on a Friday that he had the mutation but would not get the disease for at least three decades, or even never if he received proper preventive treatment. The following Monday, he was fired, because the employer was worried about the safety of the employee using their equipment.
“The reality of it is this law is not just about insurance,” Heim-Myers said. “It is about contracts and service providers that have access to genetic test information. The law actually is the government using their criminal law power to stop an action like genetic discrimination that is harmful. Quebec doesn’t agree with that.”
“We need to start using these tests for the right reasons, most of the time, it is not discriminatory to use genetic tests, but often, vulnerable are targeted, and that’s when it becomes a problem.”
— Yann Joly, Research Director for the Centre of Genomics and Policies at McGill
Yann Joly, the research Director for the Centre of Genomics and Policies at McGill, has conducted research on genetic discrimination in Quebec. According to Joly, the main issue around genetic discrimination is the lack of information. Not only do patients often not know about genetic discrimination, but doctors also have trouble bringing up the topic.
“Doctors don’t always know how to inform people in procedures like consent forms. Sometimes, genetic counsellors are uncomfortable, and act according to their intuition rather than reliable information,” Joly said.
The result of the study conducted worldwide revealed that genetic discrimination was not that prevalent. Rather than affecting everyone, it seemed like most of the people affected suffer from monogenic diseases.
These are diseases that are caused by a mutation in a single gene, meaning that if one of your parents has a disease, you have a 50 per cent chance of getting it yourself. And if you have that mutation, you have a very high risk of getting the disease.
These diseases include Huntington’s disease, and mutations in BRCA1 and BRCA2 genes.
“For insurers, it meant that these people are at risk of dying earlier than the average, and it is for this reason that they refused to insure them,” he said. That is one example of how people can be discriminated based on their genome.
The problem, according to Joly, is not about genetic tests themselves.
“We need to start using these tests for the right reasons,” he said “Most of the time, it is not discriminatory to use genetic tests, but often, [the] vulnerable are targeted, and that’s when it becomes a problem.”
Certain groups are more at risk of developing certain diseases. For example, Ashkenazi women from Eastern Europe have a higher probability of developing breast cancer at some point in their lives.
“They have a higher risk of developing this disease, and, on top of that we’re going to discriminate them based on a genetic test,” he said. “That’s a problem.”
However, Joly said that genetic discrimination goes even further than insurers, employers, or landlords. It is used regularly on immigrants. Joly believes that another issue with genetic testing is that it targets those who immigrate to Canada.
“Immigration Canada has used genetic testing for 15 to 20 years when a Canadian citizen wishes to sponsor one of their family members for immigration,” he said.
When an immigrant applies for Canadian citizenship, they can be asked to pass a genetic test in the case that they want to sponsor their children. “Apart from the realm of immigration, Canada recognizes that all families are not necessarily linked biologically,” he said. Consequently, an immigrant may discover that he is not the father of his child, which may therefore result in the child not be able to immigrate.
Undocumented immigrants are also affected. If they refuse to cooperate with the Canadian Border Services Agency, they may be forced to pass a DNA test in order to help authorities decide where to deport them to.
VICE News revealed earlier this year that the CBSA used family ancestry websites to do so, like FamilyTreeDNA.com. This is very problematic in that those sorts of websites are not fully reliable.
“To find your ethnic origin, you need to compare your DNA to the DNA of people from every ethnic group of the planet,” said Joly. “But if the company does not have the DNA of every ethnic group, the picture can’t be fully accurate.”
Ethnic origin does not reveal one’s nationality. In fact, over 200 ethnic origins were reported in a 2011 National Household Survey in Canada. “If I passed a genetic test, it would probably tell me that I am from northern Europe,” said Joly. “But I am a Canadian citizen.”
It is virtually impossible to rely on such tests to affirm someone’s citizenship, and that is the problem, said Joly.
Joly believes that the evolution of genetics is going to change the way humans see themselves, to the same extent that the revolution in information technologies changed the world. People need to be better informed and know what is happening.
“Society needs to be ready,” he said. “But we lack preparation.”
Before Smith’s hysterectomy, she gave birth to two children. Even though the mother would like to have her sons pass genetic tests for cancer prevention, she has decided to wait until they are 18 years old in order to give them the choice.
“I don’t want them to have trouble finding an insurance later because I decided that they should take a test,” she said. “I prefer to give them a choice.”