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Canadians answer call to share genetic data

Canadians are anxious about publicly sharing their DNA – and all that it might say about their potential health risks, strengths and weaknesses – the response to a call for volunteers to put their genomes online doesn't suggest it.

In the 11 days since Canadian researchers launched a bold new project to create an open, online storehouse of genetic, medical and personal information for science, more than 350 people have volunteered to publicize their DNA and intimate details on a website that the whole world can see.

The number, which continues to grow by the day, far exceeds what the founders of Canada's Personal Genome Project expected. Study leader Stephen Scherer said they had hoped to recruit 35 to 100 people during the project's first year. Dr. Scherer, a senior scientist with Toronto's Hospital for Sick Children, says his team has been "overwhelmed" by the response so far.

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A joint effort of Sick Kids and the University of Toronto's McLaughlin Centre, the Personal Genome Project is an offshoot of a research initiative started at Harvard University six years ago. It aims to kick-start genetic research, which has suffered for the lack of DNA, by accumulating a massive collection of genetic profiles and combining them with personal details of participants so that scientists can study the relationships between environmental factors and genetic makeup.

Participants may have nothing to gain personally from having their DNA sequenced, since scientists currently understand only about 5 per cent of humanity's genetic code. But the risks of taking part, perhaps for the greater good of medicine, could be considerable. No one knows how genetic information made public might be used or misused by insurers, employers, or criminals and each volunteer will have to go through an intensive "informed consent" process.

Along with assuming privacy risks, participants are also asked to pay for their own genomes to be sequenced, at a cost of about $4,000, and to cover the costs of decoding the DNA of one other person. Because of the costs, the project team expected the number of volunteers to be limited, but Dr. Scherer says several of those who have signed up have offered to pay for two or more.

The cost to sequence a genome has dropped from a few billion to a few thousand dollars in a dozen years. And as the price to sequence continues to plummet, it's driving massive international efforts to decode as many people as possible to figure out the root causes of disease, and develop prevention plans and medical treatments tailored to individual patients.

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