Participating in the Harvard PGP
The Harvard Personal Genome Project (PGP) provides an opportunity for individuals to help drive biological research. Each of us has different traits, genetics and environmental exposures – even identical twins. The PGP uses an unconventional Open Science approach to provide a platform that allows scientific researchers to make connections between diseases, traits, environmental exposures and genetics. Through participation in the PGP, individuals publish data about themselves that can then be analyzed by researchers anywhere on the planet to understand human biology.
In addition to genetic and existing trait data, scientists are increasingly using human cell lines from individuals with varying traits or diseases to understand human biology in the lab. Although cell lines have always been part of the PGP effort, the project will focusing on making more cell lines from participants available for study. To date, participant cell lines have been made available through a relationship with the Coriell Cell Repository.
Requirements for enrollment
- Willingness to share genetic, health and trait data in a public and non-anonymous manner.
- United States citizen or permanent resident.
- At least 18 years of age.
- Capable of giving autonomous consent. We do not permit enrollment through legal guardianship, for example.
- Current employees and students of the Principal Investigator (Dr. George Church) are not eligible.
- Identical (monozygotic) twins are welcome, but both twins must complete the enrollment process to be eligible.
Once enrolled, each participant decides their own degree of engagement in the study by controlling the amount of genetic and trait information that they upload to their public profile. The more data a participant uploads, the more valuable they become as a subject for scientific research. Current participant public profiles can be found here.
When the project began in 2005, fewer than 20 people in the world had been sequenced, and the cost to sequence a new human genome was over $350,000. In subsequent years, when funded to do so, the PGP has performed whole genome sequencing for participants who donated samples (about 400 so far). The cost of genome sequencing has dropped exponentially and is now under $1,000 for a whole human genome sequence, and there are now many options for individuals to obtain whole or partial genome sequences. Therefore, since 2105, the project has been shifting focus towards participant-contributed genomic data and preparing to increase the availability of cell lines for research.
Enrolling in the Harvard PGP is an online process. Individuals considering participation should closely review our study guide and consent forms. To qualify for enrollment, prospective participants must complete an online exam to demonstrate their comprehension of the risks and protocols associated with being a member of the Harvard PGP.
Click here to read about the enrollment and study procedure in more detail.