"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 personal genomics and personalized medicine. It was initiated by Harvard University's George M. Church and announced in 2005. As of August 1, 2014, more than 3,500 volunteers have joined the project. Volunteers are currently accepted if they are permanent residents of the US, Canada or the UK, and are able to submit tissue and/or genetic samples. The Project is planned to launch for Europe and in development for South America and Asia.I'm naturally very keen to get my entire genome sequenced and interpreted, and relaxed about the privacy issues. The PGP disclaimer document you have to sign is pretty lurid - here are some of the dangers you're warned against.
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 principal investigator George Church 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
Keith Batchelder, Genomic Healthcare Strategies
George M. Church, Harvard
Esther Dyson, EDventure Holdings
Rosalynn Gill-Garrison, Sciona
John Halamka, Harvard Medical School
Stan Lapidus, Helicos BioSciences
Kirk Maxey, Cayman Chemical
James Sherley, Boston stem cell researcher.
Steven Pinker, Harvard
In order to enroll each participant must pass a series of short online tests to ensure that they are providing informed consent. By the end of 2012, more than 2000 participants had enrolled in the Harvard PGP. As of August 1, 2014, more than 3,500 volunteers have joined the project."
"(ii) Anyone with sufficient knowledge and resources could take your DNA sequence data and/or posted trait information and use that data, with or without changes, to:and, a little later,
(A) accurately or inaccurately reveal to you or a member of your family the possibility of a disease or other trait or propensity for a disease or other trait;
(B) claim statistical evidence, including with respect to your genetic predisposition to certain diseases or other traits, that could affect the ability of you and/or your family to obtain or maintain employment, insurance or financial services;
(C) claim relatedness to criminals or other notorious figures or groups on the part of you and/or your family;
(D) correctly or incorrectly associate you and/or your relatives with ongoing or unsolved criminal investigations on the basis of your publicly available genetic data; or
(E) make synthetic DNA and plant it at a crime scene, or otherwise use it to falsely identify or implicate you and/or your family."
"More nefarious uses are also possible, if unlikely. DNA is commonly used to identify individuals in criminal investigations. Someone could plant samples of DNA, created from genome data or cell lines, to falsely implicate you in a crime. It’s currently science fiction -- but it’s possible that someone could use your DNA or cells for in vitro fertilization to create children without your knowledge or permission, or to create human clones."In any event, my attempts to sign up were met with this response.
"Dear PGP-UK Volunteer,So I'll just have to wait my turn. Watch this space.
The response to our recent request for enrolment has been fantastic and the first available 1,000 slots have now all been assigned. To help us establish a smooth running of the entire process, we have temporarily paused the enrolment to focus our limited resources on the first 1000 volunteers.
We will open the enrolment again as soon as we can. In the meantime, you can follow our progress on the PGP-UK web site (http://www.personalgenomes.org/uk) and social media (http://blog.personalgenomes.org) of the international PGP Community.
Thank you for your patience and continued support,