More disturbing is what they say at the bottom about how easily people can now be tracked using nothing more than DNA, never mind the personal information it contains about you.
The study of physics is like looking at the cheat codes of the universe. The study of genetics is looking at your cheat codes.
The Toronto Sun wrote:Locked securely inside you sits the most valuable and private data you'll ever know — your own biological blueprint.
A miraculous set of instructions cling to your DNA, determining everything from eye colour to whether you can taste the bitterness of certain chocolate to whether you can sprint fast when a sudden rain shower arrives to your risks of any number of God-awful diseases that could strike you tomorrow or 20 years from now.
This is an extremely personal master plan.
And in Canada, others can use this information — coded onto your 23 chromosomes in a complicated pattern using just four letters — against you.
We are the only G8 country that still does not have specific laws protecting our people from genetic discrimination.
This could include an insurance provider that won't issue a policy because of questionable findings in genetic testing.
It also extends to companies that may see this information as another way to judge, or reject, candidates for work.
As other countries have brought in legislation to protect their population, Canada has followed the advice of insurance providers, and taken a wait-and-see approach.
Supporters of this contemplation argue cases of genetic discrimination haven't been found to be systemic and are simply fear mongering.
But this is alarming to those who want to safeguard our blueprints.
"We say it's past time to wait and see," says Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, a coalition of 15 organizations, including Alzheimer Society of Canada, Ovarian Cancer Canada and Muscular Dystrophy Canada. "It's time to protect this information."
Families with a history of Huntington disease make up the bulk of reported cases of genetic discrimination — one study finding 30% of those at risk of the inherited brain disorder have faced discrimination. But Heim-Myers says she's heard of others being rebuked by insurance companies, including families who've dealt with conditions like Parkinson's, a nervous system disorder that doesn't have genetics as a prime cause.
She worries fearful people won't get tested.
The Canadian Life and Health Insurance Association (CLHIA) argues insurers don't require an applicant to undergo genetic testing, though Heim-Myers says they can still chose not to extend insurance unless a person has a test to prove they do not have a gene mutation.
The challenge with judging results of genetic sequencing, she points out, is that the results may not be relevant.
"Genetic information is still not clearly understood and not that predictable, with the exception of a small number of mono-genetic diseases," she says.
"The insurance industry is making definitive decisions based on information that may or may not lead to future disabilities."
In a written response to questions, a CLHIA spokesman e-mailed: "Legislation that would limit insurers' ability to collect relevant and material information would negatively impact Canadians.
"Insurers would not be able to properly assess and price risk and ensure that individual Canadians were paying a fair price for their given risk level."
They also note the industry is becoming more liberal in policies, including insuring those with diabetes and cancer, where it the past they wouldn't.
While past Conservative, Liberal and NDP campaigns have pledged to put legislation in place to outlaw specific genetic discrimination, so far promises have not led to changes in the Canadian Human Rights Act and the Canadian Labour Code.
Sen. James Cowan, Liberal leader in the Senate, aims to do that with a bill that would impose stiff penalties on those who discriminate based on DNA.
"I think the main driver here ... is that the science is exploding," says Cowan, whose bid has a better chance than a similar private members' bill introduced in the House of Commons last year by NDP MP Libby Davies.
Cowan says there has to be a balance between privacy rights and the work of insurance companies.
In an e-mail exchange with the Office of the Privacy Commissioner of Canada — several provinces have their own watchdogs — a spokesman points out to QMI Agency: "The question of ownership is a complicated issue, but it's our view that the results of genetic testing are the personal information of the individual involved."
They're now looking at whether life and health insurance companies need to access an applicants' genetic analysis for underwriting purposes.
Last year, investigations by two academics concluded: "A ban on the use of genetic information by Canadian life and health insurance providers ... wouldn't have a significant impact on the efficient operation of insurance markets."
Privacy Commissioner officials also expect, as more Canadians are tested, their office is likely to hear from more of us over who can see our biological blueprint — and whether it will be used against us.
'This is why people don't want to be tested'
Lynn could see her future spelled out across the computer screen at her doctor's office.
Information she did not want them to have — yet.
She had taken part in a pre-symptomatic test for Huntington's disease, and she had tested positive — following in the difficult footsteps of her father, who lives with the neurodegenerative genetic disorder.
The chances of her developing Huntington's before the test was an assumed 50%. After a genetic workup it shifted to 100%.
But the 24-year-old woman from London, Ont., had not intended for her doctor to be told.
Lynn — we're not using her full name for privacy reasons — feared the news would then find its way into the hands of her life insurer, and they would drop her policy.
Due to a lapse in the process — a simple filing of paperwork even though she explicitly told subsequent neurological testers to keep the information to themselves — it bled through the system.
She saw it come up on a file when she went to see her doctor — something most people would want, but not in her case.
Her life insurance that was secured around the time of her results was suddenly terminated.
"This is why people don't want to be tested," she says.
Before testing was available, most people polled said they would take a test if available. But while that is now a scientific option, the majority at risk of Huntington's reportedly live with unknown odds.
Those with a family history of Huntington's often run a gauntlet of privacy and ramifications. Sometimes dismissed as skewered examples of genetic discrimination, since there is a definite genetic link, they remain strong reminders of how data has a way of leaking out.
But there are other examples, including in the double-blind world of research.
Scientists have found stark examples of ghosts in the machine, including research subjects being tracked down simply through donated DNA.
Earlier this year, experts at an affiliate of the Massachusetts Institute of Technology identified five people — within a few hours — by using genetics plucked at random from a database.
They just needed their DNA, age and what state they lived in.
Then they also found their families.
There have been other cases of researchers picking the locks of genetic coding bobbing in an ocean of other data to narrow individuals down — including pinpointing their physical characteristics.
We're used to computer hackers accessing our computers. This is the ability of interlopers to run fingers along our own wiring.
This represents a huge challenge to institutions and researchers safeguarding needed raw information.
It also speaks to how personal findings can always spill out.
Lynn, left without insurance, has come to believe: "We now have to protect ourselves from society.
"And that's not the way it should be."
