When Brittnee Sheridan turned 18, she was legally allowed to undergo genetic testing for BRCA1, a gene that increases risk of breast and ovarian cancers. She did, immediately – even though her grandmother was against it. "We got into an argument because she didn't want me to get a test," says Sheridan, who lives in Sudbury. "She said I was ruining my life, potentially."
Her grandmother had good reason to urge caution – her insurance company had cut her off after she tested positive for the gene. With the help of a lawyer, she eventually re-qualified for coverage, but at a limited amount. Worse, though, was the sting of being singled out for her genetic background. It stuck with her, and with other members of the Sheridan family, who have a 50-per-cent chance of carrying the gene. Neither Sheridan's mother nor aunt has applied for insurance as a result. Her 15-year-old brother says he won't be tested.
Canada is the only country in the G7 that does not have a law in place to protect people from discrimination based on their genetics. Considering that there are more than 33,485 genetic tests available, and counting, the lack of protection affects everyone. Medical science is unlocking a database of life-saving information, but Canadians face a major barrier to obtaining that information.
To correct the situation, Senator James Cowan has proposed the S-201 Bill – also known as the Genetic Non-Discrimination Act – which is in the final stages of debate in the Senate. If passed, it will make it illegal for anyone to request genetic testing, or to ask a person for results, or collect or disclose the results of a genetic test without the person's permission.
It would also add "genetic characteristics" as a type of discrimination under the Canadian Human Rights Act. Anyone who violates the new Act would face stiff penalties: up to $1-million or imprisonment up to five years.
"The insurance companies are opposed to it," Cowan says.
Insurance companies argue that they do not ask for genetic testing; however, they do ask for family medical history, Cowan says. And they will ask you to prove that you're not at risk for something, and that would require testing. He's seen case after case where such information was used against a person.
"They also say that the insurance industry is a matter of provincial legislation. And we have constitutional law experts to support that this is a valid exercise of federally legislated power to prohibit a pattern of discrimination. We are simply regulating and prohibiting undesirable behaviour. It's a use of the federal power to legislate on criminal power."
The non-profit Canadian Life and Health Insurance Association, which represents 99 per cent of life- and health-insurance businesses, was not contacted for comment.
But in a letter to The Globe and Mail published Apr. 6, CHLIA president Frank Swedlove said: "Once a person has made full disclosure and purchased a policy, their coverage cannot be impacted in any way by information from genetic tests taken after the policy is in place."
He added: "The vast majority of applications for insurance are approved, and genetic testing does not have an impact on group insurance obtained through an employer or other group."
Sheridan, who is now 22 and considering a career in law, tested positive for the BCRA1 gene. But she does not fear discrimination from future employers or insurance companies because she feels that knowing if she has the gene is more important. For example, her doctor has advised her to have children before she turns 30. Later, she'll need to decide whether to take surgical precautions, such as having a hysterectomy.
"I think anybody who would not take a test to possibly save their life or prolong their life, because they're scared of life insurance or job promotion, is ludicrous," Sheridan says.
But results could also be used against family members, which makes testing an even weightier decision. That's why doctors currently advise patients to get insurance prior to testing. Even the recreational genetic tests now available online, such as 23andMe, come with a caution for Canadian participants.
No provinces or territories have anti-genetic-discrimination laws in place, but Cowan says it's better to have a set of standards for the country. As well, criminal law is more powerful when a major corporation with deep pockets is involved. "If we use federal criminal law, it's a prosecution and the state carries the can."
The issue is a priority because genetic study is transforming health care. The study of the human genome, or genetic sequencing, is a new, exciting and quickly growing frontier in medicine. As technology advances and the cost of genetic testing has dropped, it's being used to diagnose and treat many cancers, heart conditions and diabetes. It can identify early onset Alzheimer's disease or inherited forms of Parkinson disease or ALS.
In this movement toward "personalized medicine," we'll all have access to the most important data of all – our own genetic code. When we understand that code, we'll know better how we will react to drugs, and if that interaction is potentially fatal. It means diseases can be treated on an individual basis, before they strike. And it makes testing of newborns crucial.
Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness and the chief executive officer of the Huntington Society of Canada, knows of the case of a 24-year-old who got fired from his first career job when he confided in his employer that he'd tested positive for Huntington's disease. On a Friday, the man's employer had noticed he appeared upset, and he told them why. When he went into work on Monday, they fired him – even though his symptoms wouldn't manifest for 20 more years. People with Huntington's disease in their family have a 50-per-cent chance of carrying the gene, which usually affects the carrier midlife. It's a devastating and progressive neurodegenerative disease. Insurance companies often refuse coverage to a carrier or charge exorbitant premiums.
Currently, human-rights and privacy laws are too vague to protect against such discrimination, Heim-Myers says. "The onus would have been on him to take it through the courts and prove that his employer fired him because of his genetic mutation. That is cost prohibitive, and it's open to interpretation. So, people aren't going to do that – they just aren't."
Dr. Yvonne Bombard, genomics health services scientist at the Li Ka Shing Knowledge Institute of St. Michael's Hospital, was the first to conduct a national study on genetic discrimination when she began hearing a common refrain about unfair treatment from patients.
"I was shocked to learn there was no policy in place to protect Canadians," she says.
Her national survey found 86 per cent of those sampled feared genetic discrimination, both against themselves and their children. Forty per cent reported experiences of genetic discrimination, which caused high levels of stress, she says.
While doing her research, she interviewed a woman whose ex-husband used her genetic status to try to claim child custody, and she knows of another case in which a couple was denied an adoption because of the woman's genetic background. She interviewed people who'd reported that they'd been denied promotions, been the subject of job surveillance, were offered early retirement, or who chose to stay in an unhappy job for fear of losing benefits and not finding employment again.
She also studied insurance applications.
"We looked at all the applications across Canada, and we found almost all 92 per cent asked about a family history of Huntington's disease or a genetic disease in the family," she says.
And if a person withholds knowledge of their genetic history, their insurance can be cancelled. All those years of paying premiums can be wasted. That barrier to eligibility is a problem, because life insurance is becoming increasingly important.
"You need it to buy a house, to open a practice, to start a business, so it's become a mechanism to participate equally in society."
Brynne Stainsby tested negative for the Huntington's gene; however, she continues to experience discriminatory practices from her insurance provider. The 32-year-old chiropractor recently applied for additional life insurance when she formed a partnership for her clinical practice, but her application took about a month longer to process than her partners' applications. She learned that the insurer needed to be absolutely sure she was still negative for the gene. (A person's genetic test would not change.) It is routine for insurers to insist that applicants resubmit documentation from doctors.
"We live in Canada. You can't discriminate against people for their gender, race, or religion … but then we are still allowed to discriminate against genetics, which is entirely outside of your control," Stainsby says. "It's totally unbelievable."
Dr. Ronald Cohn is chief of the division of clinical and metabolic genetics at the Hospital for Sick Children. Like Bombard, he spoke in favour of the bill at the public hearings for the Standing Senate Committee on Human Rights.
Cohn has found several cases where people did not get testing because of fears of unfair treatment, including a woman who has put off colonoscopies, even though she's at genetic risk of colon cancer. Others are shocked that the law doesn't protect them.
He says many countries in Europe, as well as the United States, already use genome sequencing as part of their clinical care. He believes our genetic makeup is no one's business, other than that of our doctor, pharmacist or any health professional that could help. And even then, it should be up to the patient to decide freely if they want to be tested, and with whom they want to share the results.
"There are a number of disorders that are more common that have genetic basis – a number of the cancer syndromes and heart conditions, which are much more common," Cowan says. "And as we develop more, and obtain more knowledge from our genome and what predisposes us to certain disorders, it will become a much larger issue over the next five to 10 years than it is now.
"That's why [Bill S-201] is more and more important and why we are behind it."
-Kerry Gold is a board member of the Huntington Society of BC
Editor's note: A version of this article incorrectly said the non-profit Canadian Life and Health Insurance Association was contacted for comment but did not respond by deadline. In fact, the group, which represents life and health insurance businesses was not contacted.