Tag Archives: canada

If Canada does not act to protect genetic data, we could see the rise of genetic discrimination

Earlier this month the Senate Human Rights Committee gutted a bill calling for a law against genetic discrimination in Canada. Instead of protecting Canadians from having their personal genetic information used against them, the bill now simply provides a definition of “disclose” and “genetic test,” and protects no one.

More than 26,000 genetic tests are now available to the public. Many do-it-yourself tests, like those offered by mail from the California-based company 23andMe, cost less than $200. As more Canadians elect to find out what their genetic blueprints say about them, Canada needs to protect their genetic information from being misused.

According to Senator James Cowan, who tabled the bill, most other Western democratic countries have laws like this already. In 2003, the United Nations’ scientific and cultural organization adopted the International Declaration on Human Genetic Data, which aims to prevent personal genetic information from being used against an individual or group.

Why isn’t Canada on board? The insurance industry opposed the original bill banning genetic discrimination, Senator Cowan said in the Senate.

Really? Should business interests be the reason this principle fails to become law?

Many Canadians who are sick and in need of treatment could be helped by genetic testing.

But with no law to protect them, they might decide not to get tested.

They might fear repercussions from their insurance company or employers down the road, if their tests indicate they carry genes that predispose them to a medical condition or disease.

Canadians may well decide not to get tested if there’s a risk their insurance premiums will go up, or that they will be denied insurance.

Ironically, when a patient is able to catch a genetic disease early through testing, they’re often able to take preventative measures that reduce the potential cost of their care for everyone involved ­— including themselves, the government and their insurers.

Genetic discrimination could come from anywhere, not just insurance companies. Should a hospital be allowed to deny a surgeon a job if he or she were found to be at risk for tremor-causing Parkinson’s disease? Would it be OK if a private school, whose reputation depends on its students’ test scores, rejected a student who carried a gene related to dyslexia?

We should not leave these decisions for Canadian organizations to make for themselves. As researchers discover more about the complicated human blueprint, Canadians will need increasing protection from discrimination that might arise from that information.

Stephanie Orford , Metro

Canadian bill banning genetic discrimination runs into hurdles

A Senate bill that would block businesses from obtaining details of someone’s genetic makeup has been watered down too much, its supporters charge.

The bill, S-201, was aimed at preventing employers, businesses and insurance companies from gaining access the results of genetic testing for any Canadian. Armed with such data, employers could use it to turn down a new hire, and insurance companies could reject applications based on genetic information.

Canada is the only G7 country that has no legal restrictions on access to the results of a genetic test. Such tests provide a window into the diseases a person is susceptible to or could pass on to their children.

On Thursday, the Conservative-dominated human rights committee in the Senate voted to remove eight of the 11 clauses in S-201 over concerns that these stepped on provincial jurisdiction by trying to regulate the insurance industry, including sections about offences and punishments.

The one substantial clause that was left in the bill prohibits employers from discriminating against an employee on the basis of genetic makeup.

Senate Liberal leader James Cowan, who spearheaded the bill, said no province directly or indirectly raised concerns with him that the original bill interfered with their jurisdiction.

“A federal bill to regulate the insurance industry would be … unconstitutional because it’s provincial,” he said. “But this is not a bill to regulate the insurance industry. This is a bill to prevent genetic discrimination.”

Conservative senators on the committee are “being selective in their views,” he said.

The Conservatives promised in the throne speech more than one year ago to bring in legislation to “prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing,” but the government has not yet done so. Given the amendments now made at the Senate committee, the government will have to find a way to craft a bill of its own that doesn’t tread on the same ground as Cowan’s rejected proposal.

It’s unlikely Cowan’s bill – even if its amended version were quickly approved by the Senate as a whole – would make it through the House of Commons before June when Parliament is expected to rise. It will not return until after the October federal election.

Sen. Linda Frum, the Conservative critic on the bill, said Tory senators would support a detailed study on the topic of genetic discrimination. She said the issue isn’t a partisan one, and that she and other Conservatives agree with Cowan that something needs to be done.

“This is an issue of technology being out ahead of us and one of the consequences that people are faced with today is they can get a test that can help them better manage their health … but there might be negative financial consequences and that is wrong,” Frum said.

S-201 had been before the Senate for two years. Several groups want to see discrimination and privacy legislation catch up with technology.

“It was a bill that would have shown the federal government was taking a leadership role,” said Bev Heim-Myers, chairwoman of the Canadian Coalition for Genetic Fairness.

“All of the provinces are aware of (the bill),”said Heim-Myers, also the CEO of the Huntington Society of Canada. “The first question (provinces) ask is, ‘What are they doing at the federal level?’ I think it’s critically important for the federal level to set the example … and then the provinces will follow.”

Jordan Press, Ottawa Citizen

Genetic Discrimination Means the Choice Between Life and Life Insurance in Canada

Protecting members of our society from discrimination based on the colour of their skin, ethnicity, or ancestry is a fundamental Canadian value. Unfortunately, Canadians across the country currently face real as well as potential future discrimination based on their DNA. Genetic discrimination is a reality in Canada, with out-dated laws enabling insurance companies and employers to target individuals and families based on the results of genetic testing.

To date, science has outpaced legislation in Canada, despite broad, multi-partisan consensus supporting action to stop genetic discrimination. Prime Minister Stephen Harper pledged to “prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing” in the last Speech from the Throne; an NDP Private Member’s Bill has been introduced in the House of Commons to amend the Canadian Human Rights Act to prohibit genetic discrimination; and theCanadian Coalition for Genetic Fairness testified this week at the Senate human rights committee regarding Liberal Senator James Cowan’s Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination.

In the early 1990s when the Global Genome Project began, Canada joined other countries in a dialogue about its possible outcomes and the potential need for safeguarding genetic information. At the time, Canada opted to take a “wait and see” approach. Nearly 25 years have passed, and ours is now the only G7 nation that does not protect genetic information.

At the same time, Canada continues to invest billions in promising genome research, the benefits of which will be diminished and degraded due to the fear and reality of genetic discrimination. In his testimony before the Senate human right committee, Dr. Ronald Cohn, Co-Director of the Centre for Genetic Medicine and Senior Scientist at the Hospital for Sick Children, noted that 3 per cent of families refused to participate in a study that could have life changing diagnostic implications for their seriously ill children, citing genetic discrimination. With research increasingly making it possible for prevention, early detection, and treatment of many diseases, genetic discrimination by insurers and employers is a barrier to the future wellbeing of every Canadian.

Genetic testing can provide diagnostic precision and more effective treatment of illness, saving lives and ultimately reducing healthcare costs. Tragically, patients all too often face a dreadful dilemma: undergo testing that could prolong and improve the quality of their lives but would make them vulnerable to discrimination, or refrain from testing and take their chances.

The case of two brothers in their twenties at risk for Long QT, a genetic mutation leading to a sudden, fatal heart attack, is illustrative. One was tested, has the mutation, will be treated, and will accordingly not die of a massive heart attack. He will also not qualify for life insurance. The other brother was in the middle of a job search and refused to get a genetic test for fear of employers finding out. He will be able to access life insurance.

Who wins in this scenario when the untested, insured brother dies at 40 years of age leaving behind a wife and young children? Does it really make sense that an employer can’t inquire about a person’s marital status, but can have access to private genetic information?

Genetic discrimination is not just an issue affecting groups of people susceptible to certain diseases. Various ethnic communities are, in some respects, just as vulnerable. For example, Jewish Canadians disproportionately carry genetic markers suggesting increased predisposition to certain types of cancer. Testing for this information, free from threat of discrimination, is vital for improving health outcomes and saving lives.

Genetic information is sensitive, complicated, and requires a high degree of protection. Failing to safeguard genetic test information and allowing insurers and employers to use an individual’s most personal genetic data against them will have lasting consequences for the health and wellbeing of all Canadians. It is time for the law to catch up with science and ensure an end to genetic discrimination in Canada.

Follow the Canadian Coalition for Genetic Fairness on Twitter.

Shimon Koffler Fogel , Huffington Post
Co-authored with Bev Heim-Myers, Chair, the Canadian Coalition for Genetic Fairness and CEO, Huntington Society of Canada

Discrimination based on genetics could soon be illegal in Canada

Even a decade ago, the idea of genetic discrimination sounded like science fiction. Today, it’s a reality Canadian law could soon address.

It is increasingly easy to have your personal genome sequenced and analyzed for genetic markers. There are now relatively simple tests that can determine if an individual is likely to develop Alzheimer’s, certain kinds of cancer,  or inherited conditions like sickle cell anemia or cystic fibrosis. That kind of information could be very powerful in the hands of the right person, or the wrong person.

That’s why Canada’s senate is studying a bill that would make it illegal to discriminate on someone based on their genetic information.

Denying someone disability insurance because they have a genetic marker for Parkinson’s disease? Illegal. Denying someone health insurance because they have a genetic marker for a rare heart condition? Illegal. Or at least that’s how it ought to be, the bill argues.

The bill would also make it illegal to force someone to undergo a genetic test, or submit the results of a genetic test, before entering into any kind of contract. It would do all of this with amendments to the Labour Code and the Human Rights Act.

“I’m hopeful that it will receive all-party support,” Liberal Senator James Cowan told the Huffington Post. “I don’t see it at all as a partisan issue.”

Cowan is the man who put forward the bill in the hopes of ensuring that basic human rights aren’t trampeled just because some people now have a glimpse of their potential future.

As Canada.com explored in our video project earlier this week, the amount of information modern genetic tests can yeild, at a relatively low cost, is surprisingly high.

For $200, anyone can have their genome sequenced and tested for dozens of known markers. The company can even keep that information on file and provide more insight as we learn more about the human genome and what each sequence of DNA actually does.

In October, Canada’s Privacy Commissioner Daniel Therrien, recognized that insurers have good reason to want this information when offering someone coverage.

“The [insurance] industry believes it needs access to all existing genetic test results to ensure a level playing field in terms of knowledge between both parties of a good faith contract,” he said. “Bill S-201 recognizes the overriding societal benefits of protecting applicants’ right to privacy and of providing all persons with insurance coverage regardless of their genetic heritage.”

The bill has been before the Standing Senate Committee on Human Rights since early this summer, after it passed second reading in the Senate. It still needs to go through the House of Commons.

William Wolf-Wylie, Canada.com

Canada Agency Clashes With Insurers on Genetic Testing

A Canadian agency is pushing life and health insurers to stop asking applicants for access to genetic test results, drawing resistance from an industry that says the data help companies properly price policies.

The request today from the Office of the Privacy Commissioner of Canada asks insurers to go beyond their voluntary moratorium on asking clients to undergo tests. Without the assurance of permanent privacy, some people would be discouraged from undergoing exams because the results could eventually be used against them, the office said.

“It is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry’s objectives,” according to the statement.

The tests may show a vulnerability to cancer or other disease. In the U.S., a law prohibits genetic discrimination by employers and health insurers. The Genetic Information Nondiscrimination Act of 2008 doesn’t apply to life insurance or long-term care coverage, according to the U.S. National Institutes of Health. Some states have additional laws.

“They say these tests aren’t necessary, we think they are,” said Frank Zinatelli, vice president and general counsel for the Canadian Life and Health Insurance Association, the industry group representing 99 percent of the industry in the country. “This would be significant if we were not permitted to collect information that’s relevant to assess risk properly.”

Katia Dmitrieva , Bloomberg