Thank you for registering for updates about the Personal Genome Project (PGP). Since our last newsletter in October, we have several exciting developments to report, including the commencement of the PGP-100 enrollment phase.

PGP-100 Enrollment Update

The PGP has commenced the enrollment of the PGP-100. If you have submitted your enrollment materials but have not received an invitation, don’t worry – we will continue to send invitations for the PGP-100. We expect to begin enrollment for the PGP-1000 later this year.

Over the next several months we will be collecting tissue samples from as many PGP-100 participants as possible and data from the PGP-100 cohort should begin to arrive on the website shortly.

GET Conference 2010

PersonalGenomes.org is organizing a conference to be held in Boston on April 27, 2010. We're calling it the GET Conference, which is short for Genomes, Environments, Traits.

The cost of personal genome sequencing continues to fall rapidly. While there are fewer than 25 individuals to-date with public genome sequences, we expect that number to climb sharply in the near future. By the midpoint of this decade, there may be 1 million or more individuals with complete genome sequences worldwide.

2010 is the last chance in history to bring a majority of the individuals with complete personal genome sequences together on the same stage to share their experiences and discuss the important ways in which personal genomes will affect key aspects of our lives. For the GET Conference 2010, we will be doing just that. Confirmed speakers, all of whom have been sequenced, include James Watson, Jay Flatley, Skip Gates, Esther Dyson, Stephen Quake, Misha Angrist, George Church, James Lupski, Dan Stoicescu, Seong-Jin Kim, Greg Lucier and Rosalynn Gill.

Proceeds from the conference will benefit PersonalGenomes.org – the non-profit organization supporting the Personal Genome Project and dedicated to serving as the global ambassador for emerging genomic technologies and knowledge that will positively impact the health and well-being of humankind. We hope to make the GET Conference an annual event where we bring together leading thinkers to discuss the impact of personal genomes on our lives, work and society.

We are offering the PGP community of supporters a special opportunity to receive a $250 discount off the registration price as a friend of the GET Conference. Register and use the discount code GETFRIEND to receive this pricing. Seating is limited to 200 people.

Register now, or visit the conference website: www.GETconference.org

For those unable to make it to Boston in April, we will be posting videos online after the conference.

Google Health Integration

The Church Lab at Harvard Medical School was recently awarded a research grant from Google to integrate the Google Health personal health record (PHR) platform into the Personal Genome Project.

By utilizing Google’s PHR platform, participants in the PGP will be able to more easily and accurately share, monitor and update their basic health data with the PGP, should they choose to do so. For example, the management of prescription medication data via Google Health provides PGP volunteers with a straightforward user-interface, controlled vocabularies, and the ability to passively collect drug data from major pharmacies as prescriptions are filled. We’re looking forward to working with the PGP participants to discover how they utilize tools like the Google Health PHR to manage their health data and, ultimately, improve their own health outcomes.

The integration is expected to be completed by summer 2010.

Updated Consent Forms Expected Soon

As part of our annual review of the PGP research study, the Harvard Medical School Institutional Review Board (IRB) has made several recommendations for improving our consent forms and study protocols. We are using this opportunity to incorporate the feedback we have received from many of you about ways we can improve the consent form. We have received about over 100 comments to-date and many of those will be reflected in the new consent forms to be published later this year, once they are approved by the IRB.