Precision Medicine


Case Study 2

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Centre for Individualised Medicine-case study

Genomics get personal: Personal Genome Project UK

The Personal Genome Project UK (PGP-UK) was established in 2013 by Professor Stephan Beck at University College London (UCL). The project recruits volunteers who publicly share their genomic, health and trait data, creating an open access resource for research.

Overall aims and objectives of PGP-UK

The overall aim of PGP-UK is to empower individuals making more informed decisions on lifestyle and healthcare choices through engagement with Citizen Science and to create an open access resource for biomedical research. To collect and share the genomic, epigenomic, environmental, trait and health data from participating volunteers, PGP-UK uses the first 'Open Consent' and 'Genome Donation' framework in the UK and Europe.

PGP-UK10 case study

While the long-term goal is to recruit 100,000 individuals, PGP-UK10 represents a case study of ten individuals who have been recruited to test the operational framework, establish analysis and reporting procedures, and to evaluate the 'user experience' of participating in PGP-UK. The 10 individuals enrolled in this case study will have their genomes, methylomes and transcriptomes analysed and have agreed to help establish the most appropriate level and format of feedback from the analysis of their data. This is with a view of optimising the processes necessary to create a useful resource for the individual and the community, but also to monitor (and avoid) any unnecessary adverse consequences the participants may experience due to their participation in the PGP-UK.   

The role of PGP in personalised/stratified/precision medicine

There is currently unprecedented consensus among researchers, clinicians, politicians and the public that personalised/stratified/precision medicine will transform healthcare and possibly lifestyle decisions in the coming decade. As national and international initiatives in this space gather pace, the main and unique roles of PGP will be:

•    To empower individuals using genomics for making lifestyle and healthcare decisions.

•    To advance and accelerate personalised/stratified/precision medicine through open access data.

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