Ms. Davies – Canuck One – says she eventually put her anxieties aside. Many Canadians have already mailed away their DNA to direct-to-consumer private testing companies, she points out, without any assurances about the accuracy of the tests, the interpretation, or the confidentiality of their information.
Unlike those testing companies, the Canadian PGP will provide genetic counselling to volunteers after their DNA is sequenced. And researchers will check in regularly with participants to gauge the social implications of having genetic information posted online.
Rather than requiring a master’s degree of its initial volunteers, as the U.S. group did, the Canadians have opted to select people with high incomes, arguing that anyone who takes on the risks of participating should have the resources to hire a lawyer should an issue arise.
In the first year of the project, which is operating without a research grant, researchers are hoping for 35 volunteers who can afford to pay $4,000 for their DNA sequence and analysis – and can pick up the tab for decoding the genome of one other person.
Robert Eilers could be the perfect candidate. The 43-year-old property developer, based outside Milton, Ont., employs 650 people globally. He has no concerns about losing his job or his life insurance, has no children and, perhaps most important, harbours no fear of the unknown.
He was first won over to genetic testing after frustrating wait times in the public-health system sent him to the MedCan clinic.
He has recently had two scans of his genome, but the first one had him hooked. It revealed that he had been taking the wrong cholesterol-lowering drug for the past 20 years and that he has a propensity for high fat levels in the blood and for obesity, but a lower-than-average risk of developing coronary-artery disease.
Genetic testing gives a person a chance to prevent conditions instead of reacting to them, he says: “My genome says I have a predisposition to obesity. It doesn’t mean I have to be obese – it means I have to work out two or three times harder to stay fit,” he says. “If you drive a car, you don’t wait for the engine to start smoking before you do something about it.”
When Ms. Davies told him about the PGP, Mr. Eilers was keen from the get-go. “I would be very happy to do this for research,” he says. “This is the future of medicine.”
Yet for all the hypothetical risks covered in the project consent form, new possibilities continually pop up. On the morning the research team gathered in October, the following scenarios came to mind:
What if a police investigator happens to find a match, or even a close match, with a crime scene DNA sample and someone in the Personal Genome Project database? (If there was a court order, they would probably have to reveal a participant’s identity.)
What if there is a plane crash and the DNA could be useful for identification of victims? (Definitely, the team would help.)
What if someone desperately looking for a tissue or organ donor found a match in the Personal Genome databank? (Here, the group members weren’t so certain.)
Dr. Scherer says that if the risks of the project prove too great, moving the data out of the public sphere is always an option. “If it turns out there are so many bad stories that come out, we’ll just stop,” he says. “We’ll say, ‘Yeah, we better keep this data inside the medical system.’ ”
But he and Dr. Church believe that won’t happen. If enough people put their DNA data online, genetic information will be demystified, becoming less scary, less significant.
“There’s more revealing information on social networking sites,” Dr. Church says. Over time, he adds, “people would be less interested in the fact that I’m homozygous for APOE-3 than who I might have hooked up with last night.”
For more information about the Personal Genome Project, please visit Personal Genome Project Canada.