Project Closed
Thank you for visiting! The Personal Genome Canada research project is now closed to new participants.
To researchers: The application previously hosting genomic data at personalgenomes.ca has been retired. We are working to publish the data to a public repository and will post a notice here when further details are available. Researchers with specific inquiries about data availability may contact – PGPC Team (personalgenomeprojectcanada (at) gmail [dot] com)
To participants: Thank you for participating in the Personal Genome Project Canada. As you have consented to make your data public, we will be uploading your genomic data to a public repository. If you need access to your data before this is completed, please contact– PGPC Team (personalgenomeprojectcanada (at) gmail [dot] com)
Background
In an unprecedented achievement, the Human Genome Project provided the first drafts of nearly complete human genome sequences in 2001 after more than a decade of effort by scientists worldwide. This information is now being used to advance medicine, human biology, and knowledge of human origins.
PGP Canada
We foresee a day when many individuals will want to get their own genome sequenced so that they may use this information to understand such things as their individual risk profiles for disease, their physical and biological characteristics, and their personal ancestries. To get to this point will require a critical mass of interested users, tools for obtaining and interpreting genome information, and supportive policy, research, and service communities. To catalyze these developments, we launched the Personal Genome Project Canada (PGP-Canada).
We believe individuals from the general public have a vital role to play in making personal genomes useful. We are recruiting volunteers who are willing to share their genome sequence and many types of personal information with the research community and the general public, so that together we will be better able to advance our understanding of genetic and environmental contributions to human health and disease.
Big data is revolutionising the way the economy, science and society operates. In healthcare, the use of genomic data has been controversial due to its issues surrounding privacy and ethics. Yet it is fast becoming one of the most intriguing and fascinating realms of modern medicine and promises to answer long-standing questions in genetic disease. PGP-C Director Stephen Scherer and ethicist Michael Szego confront the challenges and opportunities for Canada and the global community.
“It's going to tell us sometimes the right answer, sometimes the wrong answer and in most cases there's no answer.”
Publications
The Personal Genome Project Canada constitutes a public resource of data from the population at large that supports evaluation of whole genome sequencing and its utility for personalized medical practice in Canada. Although most variants identified by whole genome sequencing were of uncertain significance or likely benign, most participants (53/56) carried at least 1 disease-associated allele.
Press
The Globe and Mail
DNA on drugs: How genetic tests could make prescriptions more precise
It’s well known that different people can react differently to the same drug, with some patients feeling no effect – and some experiencing unwanted, even fatal, reactions. Now that reading patients’ DNA has become cheap and easy, writes Carolyn Abraham, pressure is mounting to make gene-guided prescriptions a regular part of publicly funded medicine
3/16/2018 Read more...
The Globe and Mail
Genomics has entered its adolescent phase: messy and unpredictable
Scientific discoveries have a life cycle. Researchers begin with a germ of an idea and watch it blossom and take unexpected turns, an awe-inspiring, and sometimes frustrating, process that is much like watching a child grow into adulthood. In genesis, and when newly born, breakthroughs fill us with wonder and dreams of unlimited promise, just like our babies.
2/5/2018 Read more...
The Globe and Mail
Cracks in the code: Why mapping your DNA may be less reliable than you think
On the health front, even before it had a name, excitement over DNA's power straddled centuries. But only the 21st has cast it as the attainable key to "precision medicine" – enabling doctors and patients to practise pro-active care: pinpointing diseases before they strike, and fighting them with targeted therapies tailored to an individual's unique genome.
2/3/2018 Read more...
Medpage Today
Peering into My Own Genome
I carry 15 rare genetic variants that have been associated with some form of disease, but I am heterozygous for all of them -- I have one intact copy of the same gene. So I carry, for instance, variants linked to early onset Parkinson's disease, Blau syndrome, ghosal hematodiaphyseal syndrome, and type 1A achondrogenesis.
8/16/2015 Read more...
The Globe and Mail
Canadians answer call to share genetic data
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.
12/21/2012 Read more...
The Globe and Mail
Would you make your DNA and health data public if it may help cure disease?
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
2/26/2012 Read more...
Team
Dr. Michael Szego
In addition to his valued contribution to PGP-C, Szego is Research Ethicist at The Centre for Applied Genomics, The Hospital for Sick Children, Clinical Ethicist, The Centre for Clinical Ethics (a joint venture of St Michael’s Hospital, St Joseph’s Health Centre and Providence Healthcare) and Assistant Professor in the Department of Family and Community Medicine, University of Toronto.
Dr. Stephen Scherer
Known for contributions to discovering the phenomena of global copy number variation (CNVs) of DNA and genes as the most abundant type of genetic variation in the human genome, Scherer leads one of Canada’s busiest laboratories. He is simultaneously Director of The Centre for Applied Genomics, The Hospital for Sick Children and McLaughlin Centre for Molecular Medicine, University of Toronto, as well as Senior Scientist at The Hospital for Sick Children and Professor of Medicine at the University of Toronto.