Personal Genome Project
The Personal Genome Project (PGP) is a long term, large cohort study which aims to sequence and publicize the complete genomes and medical records of 100,000 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] Volunteers are currently accepted only if they are permanent residents of the US, and are able to submit tissue and/or genetic samples in the US.
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 placed within the public domain and made available over the Internet so that researchers can test various hypotheses about the relationships among genotype, environment and phenotype.
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 include 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". These volunteers are:
- Misha Angrist, Duke Institute for Genome Sciences and Policy [3]
- Keith Batchelder, Genomic Healthcare Strategies [1]
- George Church, Harvard
- Esther Dyson, EDventure Holdings
- Rosalynn Gill-Garrison, Sciona [2]
- John Halamka, Harvard Medical School [3]
- Stan Lapidus, Helicos BioSciences [4]
- Kirk Maxey, Cayman Chemical [5]
- James Sherley, Boston stem cell researcher.
- Steven Pinker, Harvard
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 begin in 2008 to recruit more volunteers toward the eventual goal of 100,000. In order to enroll each participant must pass a series of short online tests to ensure that they are providing informed consent.[4]
[edit] See also
[edit] References
- ^ Emily Singer. The Personal Genome Project, Technology Review, 20 January 2006
- ^ Duncan, David (2010-06-07). "Scientist at Work: George M. Church - On a Mission to Sequence the Genomes of 100,000 People". The New York Times. http://www.nytimes.com/2010/06/08/science/08church.html?_r=1. Retrieved 2010-08-18.
- ^ Misha Angrist, Robert M. Cook-Deegan Who Owns the Genome? The New Atlantis, Number 11, Winter 2006, pp. 87-96.
- ^ Emily Singer. Your Personal Genome, Technology Review, 6 December 2007
