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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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She thought she had no qualms, but just before her blood was drawn for the PGP, she says, “It hit me. … I’m about to make my information publicly available. Gee, do I want to do this?”

The PGP consent form acknowledges the risks of public exposure: Participants and their families might be stigmatized and lose the ability to obtain life insurance, a job or a loan. They could learn about health conditions they were unaware they had, discover they are not biologically related to their families, or even risk someone making a synthetic copy of their DNA and planting it at a crime scene.

And Canada is the only Group of Eight country without a specific law to protect the uses of genetic information.

“Science has outperformed legislation,” says Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, a Kitchener, Ont.-based group of 15 organizations devoted to patients with diseases that have genetic components.

As initiatives such as the PGP hasten ahead, society has barely begun to debate all the choices they might entail. It could produce a generation of the worried well, fearful of genetic risks that might never transpire, perhaps costing untold sums to the medical-care system. Open-source projects such as this could lead to genetic discrimination. A more complete picture of the genome could promote selective reproduction and the questions around abortion, eugenics and fairness that follow.

Dr. Scherer says the PGP is “definitely going to be a win for the research community if people participate.” But he acknowledges, “Whether it will be a win-win [for both research and the individual], we just don’t know.”

In fact, one October morning, as the PGP researchers met to iron out details, even the ethicist who has spent the past two years steering the project through approvals took the team aback by saying he wasn’t certain he would pony up his own genome for the cause.

“I’m 95 per cent there,” said Michael Szego, as his colleagues laughed in surprise. “I mean, I probably will, right? So I understand what people are going through.”

Later, Dr. Szego, of the Centre for Clinical Ethics at the University of Toronto, said his main concerns were around insurance, and the effects on his three young kids. “I have never had any genetic testing before.”

Many advocates argue that this is too momentous a set of issues for Canada to leave up to fate.

“It’s time,” Ms. Heim-Myers says, “that our federal and provincial legislators and decision-makers recognize that to move forward with this very promising research we must also protect Canadians.”

For most of his career, Dr. Scherer has been on the leading edge of surprising discoveries about human DNA, including some that demonstrate how much more complicated the genetic realm is than we used to imagine – and why it will require massive scale to assemble the whole picture.

He was part of the international team that overturned 150 years of science with proof that mom and dad do not always contribute equally to the creation of a child, with one copy of each gene. Some people can inherit several copies of a gene from one parent, or carry no copies at all, and still be healthy. These copy-number variants are part of what make individual genomes unique. But DNA varies in a multitude of other ways that researchers still do not understand.

I once went to see Dr. Scherer with my own questions about what “normal” looked like, genetically speaking. I had volunteered to be part of a hospital research project a few years previously, while I was pregnant with my first child, and doctors had snapped images of my chromosomes, a test known as karyotypying.

A genetic counsellor had called me to come into the hospital when the results came back. I panicked. Health-care professionals rarely suggest a visit to share good news.

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