Founded in 2013 by Stephan Beck, the United Kingdom Personal Genome Project is located at University College London.
PGP-UK 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.
Public Data, Methods, and Materials
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.
Stephan Beck, PGP-UK director
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.
Horizontal panels depict the general sample/data categories and options (e.g blood and/or saliva) and vertical panels depict specific data types and their flow from start to end.
Ongoing Participatory Research
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.
Genomes, Environments, and Traits
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.