Today has seen the launch of Personal Genome Project UK, an organisation seeking 100,000 UK volunteers to have their genomes sequenced. Their sequence analysis data will be made available to the volunteers and to researchers around the globe. The project is uses an ‘open consent’ model: information attached to each individual’s record will be published online and will not be anonymised.

The announcement of this project raises many important questions about consent, privacy, anonymisation and data linking which are central to the Council’s current consultation on the use of biological and health data.

In an interview with BBC News Dr Peter Mills, Assistant Director at the Council, said:

"The difference with genetic data is you're not just committing yourself to something you might not fully envisage, but you're also implicating biological relatives. There is potentially huge public benefit, but there is the potential for it to rebound, how that rebounds on the person, families and those yet to be born is very difficult to know."

The Personal Genome Project UK is part of a global network started in the USA in 2005. Its purpose is to create a collection of many human genomes that remain ‘connected’ with their owners by being identifiably associated with the donors, who will contribute additional information over their lifetime. This is intended to help to improve understanding of how human traits are formed through the interactions between genomes and environment.

Find out more about the Council’s project on the collection, linking, use and exploitation of biological and health data.