Personal Genome Project
Encyclopedia
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. 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 chromosome
s) 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:
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
.
Personalized medicine
Personalized medicine is a medical model emphasizing in general the customization of healthcare, with all decisions and practices being tailored to individual patients in whatever ways possible...
. It was initiated by Harvard University
Harvard University
Harvard University is a private Ivy League university located in Cambridge, Massachusetts, United States, established in 1636 by the Massachusetts legislature. Harvard is the oldest institution of higher learning in the United States and the first corporation chartered in the country...
's George Church
George Church
George Church is an American molecular geneticist. He is currently Professor of Genetics at Harvard Medical School, Professor of Health Sciences and Technology at Harvard and MIT, and a core faculty member at the Wyss Institute for Biologically Inspired Engineering at Harvard University.With...
and announced in January 2006. 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
Genotype
The genotype is the genetic makeup of a cell, an organism, or an individual usually with reference to a specific character under consideration...
(the full DNA sequence
DNA sequence
The sequence or primary structure of a nucleic acid is the composition of atoms that make up the nucleic acid and the chemical bonds that bond those atoms. Because nucleic acids, such as DNA and RNA, are unbranched polymers, this specification is equivalent to specifying the sequence of...
of all 46 chromosome
Chromosome
A chromosome is an organized structure of DNA and protein found in cells. It is a single piece of coiled DNA containing many genes, regulatory elements and other nucleotide sequences. Chromosomes also contain DNA-bound proteins, which serve to package the DNA and control its functions.Chromosomes...
s) of the volunteers, along with extensive information about their phenotype
Phenotype
A phenotype is an organism's observable characteristics or traits: such as its morphology, development, biochemical or physiological properties, behavior, and products of behavior...
: medical records, various measurements, MRI
Magnetic resonance imaging
Magnetic resonance imaging , nuclear magnetic resonance imaging , or magnetic resonance tomography is a medical imaging technique used in radiology to visualize detailed internal structures...
images, etc. All data will be placed within the public domain
Public domain
Works are in the public domain if the intellectual property rights have expired, if the intellectual property rights are forfeited, or if they are not covered by intellectual property rights at all...
and made available over the Internet
Internet
The Internet is a global system of interconnected computer networks that use the standard Internet protocol suite to serve billions of users worldwide...
so that researchers can test various hypotheses about the relationships among genotype
Genotype
The genotype is the genetic makeup of a cell, an organism, or an individual usually with reference to a specific character under consideration...
, environment and phenotype
Phenotype
A phenotype is an organism's observable characteristics or traits: such as its morphology, development, biochemical or physiological properties, behavior, and products of behavior...
.
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
Institutional review board
An institutional review board , also known as an independent ethics committee or ethical review board , is a committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim to protect the rights and welfare of the...
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
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
. As sequencing technology
DNA sequencing
DNA sequencing includes several methods and technologies that are used for determining the order of the nucleotide bases—adenine, guanine, cytosine, and thymine—in a molecule of DNA....
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
Genotype
The genotype is the genetic makeup of a cell, an organism, or an individual usually with reference to a specific character under consideration...
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
- Keith Batchelder, Genomic Healthcare Strategies http://www.genomichealthcarestrategies.com/bios/bio_keithb.html
- George ChurchGeorge ChurchGeorge Church is an American molecular geneticist. He is currently Professor of Genetics at Harvard Medical School, Professor of Health Sciences and Technology at Harvard and MIT, and a core faculty member at the Wyss Institute for Biologically Inspired Engineering at Harvard University.With...
, Harvard - Esther DysonEsther DysonEsther Dyson is a former journalist and Wall Street technology analyst who is a leading angel investor, entrepreneur, philanthropist, and commentator focused on breakthrough innovation in healthcare, government transparency, digital technology, biotechnology, and space...
, EDventure Holdings - Rosalynn Gill-Garrison, Sciona http://www.nutrigenomics.org.nz/index/page/177
- John HalamkaJohn HalamkaJohn D. Halamka is a physician and technology leader who focuses on the adoption of electronic health records and the secure sharing of healthcare data for care coordination, population health, and quality improvement.-Early life, education, and early career:...
, Harvard Medical School http://www.hmfpinformatics.org/people/ - Stan Lapidus, Helicos BioSciences http://ir.helicosbio.com/management.cfm?expand=true
- Kirk MaxeyKirk Maxey- Personal life :Kirk M. Maxey was born in Kanab, Utah. One of five children born to parents who were both employed by the National Park Service, he spent his childhood in a number of different parks including Grand Canyon, Grand Teton, and Yellowstone National Parks.- Education and Academic Career...
, Cayman Chemical http://www.caymanchem.com/app/template/staff,Home.vm/a/zhttp:/www.freep.com/apps/pbcs.dll/article?AID=2006605210638 - James SherleyJames SherleyJames Sherley is a biological engineer at Boston Biomedical Research Institute.Sherley's education includes a B.S. from Harvard University and an M.D and a Ph.D from Johns Hopkins University School of Medicine, Baltimore, Maryland. He was a Postdoctoral Fellow with Arnold J...
, Boston stem cell researcher. - Steven PinkerSteven PinkerSteven Arthur Pinker is a Canadian-American experimental psychologist, cognitive scientist, linguist and popular science author...
, 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 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
Informed consent
Informed consent is a phrase often used in law to indicate that the consent a person gives meets certain minimum standards. As a literal matter, in the absence of fraud, it is redundant. An informed consent can be said to have been given based upon a clear appreciation and understanding of the...
.