Go to the Globe and Mail homepage

Jump to main navigationJump to main content

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)

Our Time to Lead

Would you make your DNA and health data public if it may help cure disease? Add to ...

Jill Davies is Canuck One.

The 39-year-old Toronto professional is the brave or, perhaps, foolhardy Canadian volunteer who will be first to go public this week in a project that will reveal the coded secrets hidden in her genome, the six billion chemical units of her DNA.

They may include not only her susceptibility to diseases such as cancer but the levels of her propensities to alcoholism, depression or obesity, or even personality traits such as risk-taking. She will also provide the personal context required to make sense of the biological data – her age, height, weight; medical records; details about how she lives, works and plays; and even her photo if she’s game.

This information – everything but her name and address – will be placed on an online database that will be open and available to anyone in the world. Even in this digital age of perpetual show and tell, exposing oneself so completely amounts to a molecular full monty: Even without a name attached, any participant might be identifiable.

Ms. Davies is making a leap of faith that at least 100,000 of her fellow citizens are also being asked to take – even though Canadian law has no strict guidelines on how this confidential knowledge might be used or misused by any insurance company, employer, police force or identity thief.

Is she out of her mind? No – at least provided her country’s laws start catching up to her.

Ms. Davies is part of the Personal Genome Project – Canada, a vast new scientific and social experiment spearheaded by the University of Toronto’s McLaughlin Centre and the Hospital for Sick Children, in co-operation with a group at Harvard University.

It is a deliberate effort to jump-start what has proved to be the stalled genetic revolution.

Since the first human-genome map was unveiled in 2000, the field of genetics has taken sharp jabs for promising the moon and barely delivering a telescope. It was supposed to allow us to target not only a disease, but each individual’s unique version of it. It was a radical new way of seeing and even changing who we are, raising fears of a brave new world of genetic determinism.

Instead, so far there have been no big breakthroughs for common illnesses such as cancer, heart disease or diabetes. Some argue genetics’ power to predict illness is no better than reading a horoscope.

What has taken off at staggering speed is our ability to decode DNA. The cost of sequencing a human genome has fallen to about $4,000 from $3-billion in 2000. But the more genomes scientists read, the more they realize that humans are far more diverse than they thought. Data are needed on a much larger scale if researchers are ever going to be able to interpret the genomes of the whole array of humanity.

In China, the Beijing Genomics Institute is aiming to decode a million people. The Saudis are aiming for 100 Arab genomes, and an international consortium is tackling the 1,000 Genomes Project, sequencing anonymous donors from 14 countries.

The prime mover of the Personal Genome Project (PGP) in Canada is Stephen W. Scherer, a pioneering Canadian geneticist with a record of scientific breakthroughs. He co-founded and directs the Centre for Applied Genomics at the Hospital for Sick Children and is the director of the University of Toronto’s $100-million genomic-medicine institute the McLaughlin Centre.

He argues that it is not just genetic but personal information that is required. DNA is a living language that responds to how we live over time, with genes that can power up or down. Without that context, there is no way to tease apart the effects of genes from environment. Dr. Scherer is looking for tens of thousands of people like Ms. Davies who are willing to hang their laundry on the public line, so that scientists anywhere can study massive numbers of genomes alongside the related personal profiles.

The PGP also could help put Canada at the forefront of the medical field – a genomic economy that Forbes magazine has estimated will be worth $100-billion within the next 10 years.

Ms. Davies knew what she was getting into: She is the director of genetic counselling at MedCan, a private Toronto clinic, and had already “had every genetic test available” through private companies in the United States. She had found out, in particular, that she carries a gene variant that puts her at risk for Alzheimer’s, an unpleasant “surprise” that in the end allowed her to make lifestyle changes she hopes will delay the onset of the disease.

Report Typo/Error
Single page

Follow us on Twitter: @globeandmail

Next story




Most popular videos »

More from The Globe and Mail

Most popular