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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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He believes people are ready to share their DNA – more than 2,000 have already signed up for the project in the United States, and many more are clamouring to do it (including 250 Canadians who have contacted the project’s U.S. website).

Eventually, he hopes it will become a global movement. Britain is expected to join next year.

“There’s been a huge change in people’s perceptions of privacy,” Dr. Church says.

A few decades ago, people simply didn’t talk about their cancers, or their sexual orientations, or their psycho-social disorders. “But now people do talk about that. They talk about what pharmaceuticals they use to deal with it … because you can benefit by talking about it.”

And, says Dr. Church’s Canadian counterpart, Dr. Scherer, today’s fears are similarly overblown. “Genes are part of who you are, not all of who you are. Once enough people get their genomes out there, it won’t matter any more,” he says, noting that everyone carries risks for something. “It’s not a big deal, and it doesn’t need to be a big deal. We need to change the mindset.”

So far, the dozens of profiles that have been posted on the website for the U.S. project reveal an eclectic collection of human traits. One volunteer reports having flat feet, another major depression and gingivitis. There’s someone with an allergy to cats, and a middle-aged man who notes that he can sing on key. Dr. Church is the one with dyslexia, high cholesterol and narcolepsy.

Harvard’s ethics review board made the professor’s participation a condition of approval, believing that he should take the same journey as his volunteers.

The condition worried him a little. His father had died of senile dementia. Dr. Church, along with his wife and daughter, feared that he might learn he inherited the APOE-4 gene variant that would put him at a higher risk of Alzheimer’s. But even then, although there is no effective treatment for the condition, he felt a person could still take “make plans” if he knew.

“You could load up on long-term-care insurance, or decide where you want to be when you get Alzheimer’s,” he says. “You could enroll yourself in studies looking for treatments.”

Not everyone would be so sanguine about learning the dark secrets of their genetic codes – or publicizing them. So the Harvard ethics board established other conditions. Participants would have to pass an intensive exam – as they will in Canada – to ensure they understand exactly what they’re signing up for.

In the United States, the first phase of the project was limited to 10 volunteers, each of whom was required to have a Master’s degree in genetics or an equivalent discipline. The requirement led to charges of elitism. But Dr. Church says it was just another way to be assured that early volunteers were as informed as they could be before consenting, and that they “would have a positive experience.”

For the most part, he says, they have. Some have discovered welcome news – that they carry “super variants,” genetic traits that can protect against conditions such as heart disease.

In his own case, Dr. Church says the insight he has gained has been a “huge relief.” He learned that he does not carry even a single copy of the high-risk variants for Alzheimer’s.

As for any unexpected consequences of publicly exposing DNA, the only notable one was an e-mail from a doctor in Seattle asking when Dr. Church had last checked his cholesterol levels. The doctor suggested that as a vegan, Dr. Church’s levels should be lower. Was he taking the right drug to control them?

Dr. Church looked into it, and by switching drugs, has since cut his cholesterol by half.

Steven Pinker, the Canadian-born Harvard psychologist and author, joined the U.S. study and discovered that he carries a gene variant that puts him at high risk of sudden cardiac arrest. But he also learned he has a variant suggesting he has an 80 per cent chance of being bald – while at 58, Dr. Pinker famously sports a rock-star mane of hair.

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