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Jill Davies, a genetic counsellor and program director with MedCan Clinics, is the first Canadian to volunteer her whole genome and personal information to be placed on a public website. (Fred Lum/The Globe and Mail)
Jill Davies, a genetic counsellor and program director with MedCan Clinics, is the first Canadian to volunteer her whole genome and personal information to be placed on a public website. (Fred Lum/The Globe and Mail)

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Dr. Pinker’s hair is emblematic of what irks critics about genomics: It’s a fuzzy survey of susceptibilities, and sometimes just plain wrong.

Mack and Amanda Erno put off knowing for as long as they could. Their experience, while not part of the PGP, demonstrates the negative consequences participants might face.

The couple from Teepee Creek, Alta., population 20, always realized Amanda’s genome might harbour devastating news. Her mother had Huntington disease, a fatal neurodegenerative disorder that can strike in the prime of life. Mrs. Erno, a 31-year-old accountant, had a 50-50 chance of inheriting it.

Mr. Erno says his wife preferred not to know, even when an insurance company pushed her to have the test. Only after the couple were ready to start a family did they decide to find out.

The news was not good. But they were still determined to try for children. At first, they attempted in-vitro fertilization, hoping to implant an embryo without the Huntington gene. When that failed, they opted to have children naturally. Their daughter, Claire, was born in June 2011, and his wife is now pregnant with their second child.

Mr. Erno says Claire will likely grow up knowing, as his wife did, that she could develop the disease. Testing for it will be her decision to make in adulthood. “Maybe by then,” he says, “there will be something that can be done about it.”

Meanwhile, Mrs. Erno was denied life insurance, an act that the Canadian Coalition for Genetic Fairness calls genetic discrimination. The coalition is pushing for a law in Canada that would prevent insurers, employers, government agencies and other authorities from using genetic information in discriminatory ways.

The Ernos’ story isn’t unusual, says the coalition’s Ms. Heim-Myers, who is also chief executive officer of the Huntington Society of Canada. People can be denied life and disability insurance coverage, or face higher premiums, for risk variants that might never develop into an actual disease.

In the United States, legislators passed a hefty anti-genetic discrimination law in 2008 that applies to health insurers and employers.

But in Canada, anti-discrimination protection is only provided through the Human Rights Act, created in 1985, years before the first human-genome map even landed.

Some claim that we may not need further measures: Because we have a public-health system, they argue, no one will be denied treatment on the basis of their genes. Yet at the moment, there is no government official even in place to comment definitively on such matters.

Still, the Office of the Privacy Commission of Canada is so concerned about potential abuses in the area that it has pegged genetic privacy as one of its top four urgent priorities to investigate.

The Information and Privacy Office of Ontario offered input on the Personal Genome Project when Dr. Szego, the PGP ethicist, came around with the proposal. One staff member told him the project sounded reasonable; another thought it sounded “like a crazy idea.”

Ontario’s Privacy Commissioner, Ann Cavoukian, says she could see both sides: “I applaud these people who do it for the greater good of research, but really, it scares me,” she says. Not only are participants posting information without knowing how others will use it, they’re exposing code that also reveals traits about the rest of their family.

Participants might be affecting the lives of their future children, Dr. Cavoukian suggest – losing them a job, for example, with an employer “who doesn’t want to take any chances on someone they are going to spend a lot of time training and investing in.”

In the United States, employers and insurers are banned from even asking applicants if they have undergone genetic testing. But nothing in Canada prevents such questions.

Dr. Szego says any volunteer is free to quit at any time if things get uncomfortable. But he acknowledges that once the information is online, there is no telling who might download and post it somewhere else. “You can never say never with the Internet.”

Even so, just last month, Dr. Szego finally decided that he would join the project after all.

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