Personal Genome Project

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The Personal Genome Project 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.

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 relationship between genotype 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 first volunteer was George Church himself. The next volunteers will probably be other tenured geneticists, because they are in a unique position to give informed consent and the above-mentioned risks apply to them only to a limited extent. Once sequencing technology becomes cheaper, and the societal issues mentioned above have been 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.

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