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.
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).
PGP Canada is a member of the Global Network of Personal Genome Projects (PGP), a group of research studies creating freely available scientific resources that bring together genomic, environmental and human trait data donated by volunteers. Initiated by George Church at Harvard Medical School in 2005, the Personal Genome Project has pioneered ethical, legal, and technical aspects related to the creation of public resources involving highly identifiable data like human genomes.
We believe sharing is good for science and society. Our project is dedicated to creating public resources that everyone can access. Privacy, confidentiality and anonymity are impossible to guarantee in a context like this research study where public sharing of genetic data is an explicit goal. Therefore, our project collaborates with participants who are fully aware of the implications and privacy concerns of making their data public. Volunteering is not for everyone, but the participants who join make a valuable and lasting contribution to science.
We respect the people behind the data, and we aim to maintain strong relationships with participants. We want to collaborate on tracking health and other traits as they unfold over time. We also want to better understand the benefits and risks related to accessing and sharing personal genomes and other types of data.
The genome is just a part of the story: genes interact with the environment to form traits. Participants may choose to contribute other public data to build public records of their health and traits. We also try to connect participants with research, education, and citizen science projects that are connected to personal genome data.