Personal Genome Project

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The Personal Genome Project (PGP) aims to publish the complete genomes and medical records of several volunteers, in order to enable research into personalized medicine. It was initiated by Harvard University's George Church and announced in January 2006.^[1]^[2]

The project will publish the genotype (the full DNA sequence of all 46 chromosomes) of the volunteers, along with extensive information about their phenotype: medical records, various measurements, MRI images, etc. All data will be freely available over the Internet, so that researchers can test various hypotheses about the relationships among genotype, environment and phenotype.

All data will be published along with the volunteer's name (since full anonymity can never be guaranteed anyway). An important part of the project will be the exploration of the resulting risks to the participants, such as possible discrimination by insurers and employers if the genome shows a predisposition for certain diseases.

The Harvard Medical School Institutional Review Board requested that the first set of volunteers included the PGP director and other diverse stakeholders in the scientific, medical, and social implications of personal genomes, because they are well positioned to give highly informed consent. As sequencing technology becomes cheaper, and the societal issues mentioned above are worked out, it is hoped that a large number of volunteers from all walks of life will participate. The long-term goal is that every person have access to his or her genotype to be used for personalized medical decisions.

The first ten volunteers are referred to as the "PGP-10". So far, nine volunteers in the PGP-10 have given permission to release their names:

Misha Angrist, Duke Institute for Genome Sciences and Policy [1]
Keith Batchelder, Genomic Healthcare Strategies [2]
George Church, Harvard
Esther Dyson, EDventure Holdings
Rosalynn Gill-Garrison, Sciona [3]
John Halamka, Harvard Medical School [4]
Stan Lapidus, Helicos BioSciences [5]
Kirk Maxey, Cayman Chemical [6]
James Sherley, Boston stem cell researcher.

In an interview in December 2007, Church stated that the sequencing effort for the above individuals had started and that the participants would get a chance to redact their trait data before publication. He also announced that the project was about to expand considerably and would recruit 100,000 volunteers in 2008; these would have to pass a test before they can participate, to ensure that they are able to give fully informed consent.^[3]