FAQ

Abram Connelly edited this page Nov 17, 2015 · 7 revisions
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This wiki collects some frequently asked questions about the Harvard Personal Genome Project (PGP).

If you haven't heard of the PGP before, start on this page. Otherwise, try the other three pages:

What is the Harvard PGP?

The Harvard Personal Genome Project is the founding pilot project in the PersonalGenomes.org Global Network. Our project hosts publicly shared genomic and health data from thousands of participants across the United States.

The Harvard PGP is an open science research project. What does that mean?

The Harvard PGP was founded in 2005 with a new vision for human health research. The project is designed to create public scientific resources that everyone can access by bringing together genomic, environmental, and human trait data donated by our participants. It is staffed by a small, largely volunteer group of researchers, engineers, and ethicists who are all pioneers in their fields.

We believe strongly that publicly sharing this data is good for science and good for society. It gives researchers access to human health data that is otherwise extremely difficult to access, thus potentially speeding up solutions to important health issues. We also try to connect participants directly with research, education, and citizen science projects that utilize personal genome data.

In order to make this possible, the Harvard PGP has pioneered the use of open consent, in which participants are NOT promised anonymity in recognition of the fact that genomic data is as unique as a fingerprint to an individual and can never be fully anonymized. Participants must go through a rigorous process to ensure that they understand the full extent of the open-ended benefits and risks of making their genetic and trait information publicly available.

All genomic and health data available on the Harvard Personal Genome Project page are under a CC0 license allowing unencumbered and free use by anyone around the world. The CC0 license allows for the use of the Harvard Personal Genome Project data without the need for additional permission or the need to credit the Harvard Personal Genome Project.

To see some examples of the datasets, including whole genomes, available through Harvard PGP, you can see our participant profiles; to see examples of the reports provided as a courtesy to participants, see the GET-Evidence Reports; the PGP cell lines are also available from the Coriell institute for medical research.

What does it mean to be a PGP Participant?

If you successfully complete this Eligibility Screening and are subsequently enrolled in the PGP, your genetic and trait information will be made available on a publicly accessible website and database. For some participants this will include sample collection for banking for genomic sequencing in the future. However, as we are a research project run by a small and mostly volunteer staff, we cannot guarantee any timeline on sequencing. We encourage participants to consider the full range of possibilities for participating, including filling out phenotype surveys, participating in third-party research and activities, and uploading data such as microbiome data, 23andMe or other direct-to-consumer sequencing, and medical health records.

How is the Harvard PGP different from direct-to-consumer services that provide ancestry data, clinical genome sequencing, or other genomic data?

The PGP's goal is to accelerate research into human health and biology by collecting and sharing genomes and other data from people who have generously chosen to donate their data to the public domain. As such, our primary focus is on supporting research and not on the delivery of a product on a set timeframe. Analysis is a strong interest of our participants, but it's also expensive to perform and maintain, and so our support for it must be minimal in order to achieve our main goals. You may want to consider various commercial services that perform interpretations of genomic data, including 23andme, Family Tree DNA, or other third party analysis tools (many of these are listed by 23andyou).

Misc. FAQ

Website issues

If you have having trouble with our PGP website, please contact use at support at hu dot pgp dash hms dot org, and we will try to fix the problem as soon as possible.