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Newsletter #1, April 2009. |
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"PGP-10" to "PGP-100" & beyond
We are now seeking to expand the PGP by one order of magnitude and enroll 100 additional volunteers, followed by 1000 volunteers, and so on, until we reach 100,000 enrollees. Over the next several weeks, the 11,000+ individuals who registered on the PGP website will receive an email with instructions on how to begin the online enrollment process. If you have already registered, you should expect to receive your invitation to begin the enrollment process by June 1st. In March of 2009, the Harvard Medical School Institutional Review Board (IRB) approved revised consent forms and procedures for the PGP. If you are interested in applying for enrollment, here are a few things you can do now to prepare: (1) Consent Forms: During the enrollment process, prospective participants will be asked to read, review, and electronically sign two different consent forms (1) the "mini-consent" for eligibility screening procedures and (2) the full consent for enrollment and ongoing participation. You should familiarize yourself with all aspects of the Personal Genome Project (PGP), including eligibility criteria, benefits, risks, and study protocols as outlined in the consent forms and throughout the PGP website. (2) PGP Study Guide: An educational study guide has been developed for prospective PGP volunteers by the Alan & Priscilla Oppenheimer Foundation. These materials are designed to help participants learn concepts relevant to passing the entrance exam. Go to the study guide website. (3) PGP Public Profiles: The public profile pages for enrolled participants in the PGP can be reviewed online. After reviewing these profile pages, you should contemplate whether you are comfortable making your genetic and trait data publicly available as well. (4) Family History: We encourage you to participate in the U.S. Surgeon General's Family Health Portrait to increase your and your family's awareness of the genetics that we may be exploring in the PGP.
non-profit support of the PGP
In October of 2008, PersonalGenomes.org became a 501(c)3 charitable organization. Having achieved nonprofit status, we hope to expand the capacity of the Personal Genome Project through the generosity of foundations, private companies, and individual donors. Our fundraising goal for 2009 is $1.5M. Contributions are tax-deductible to the extent permitted by law. Donate now.
Genetic literacy mattersPersonalGenomes.org is pleased to welcome the Alan and Priscilla Oppenheimer Foundation to our list of supporters. They generously have offered to support the Personal Genome Project through the development of an educational study guide and website to help prepare volunteers for enrollment in the PGP. They have released an early version of the study guide at www.pgpstudy.org In prior years, all volunteers were requested by the Institutional Review Board (IRB) to have a "master's level degree or equivalent training in genetics". While this may have been a necessary first step, we have been working on a more scalable, rigorous, and educationally valuable method to improve the informed consent process and expand the number of individuals eligible to participate in the PGP on an informed basis. The eligibilty screening process for the PGP now includes an "entrance exam" where volunteers can demonstrate their comprehension of concepts relevant to participation, such as genetic literacy, project protocols, and human subjects research.
PGP cited as Top INNOVATION of 20082008 was a landmark year for genetics, which took top honors in several categories last year: Top 100 Stories of 2008, Discover Magazine: #9 "Your Genome, Now Available for a (Relative) Discount" Top 10 Innovations of 2008, The Scientist : #1 & #4 SOLiD and Polonator sequencing instruments. Invention of the Year 2008, Time Magazine: #1 “The retail DNA test” Global Elite "Power of Ideas", Newsweek: For the category of medicine, the Personal Genome Project.
documentary film: Marilyn nesSTwo-time Emmy award-winning filmmaker, Marilyn Ness, is producing on a documentary film following Dr. George Church and the volunteers of his Personal Genome Project (PGP). GENOME: The Future Is Now provides an exclusive look behind-the-scenes of an unprecedented experiment at the crossroads of science, health, and ethics. In addition to filming the first gathering of the PGP in July, 2007, the crew was present at the second annual PGP meeting (October 2008) to film each of the ten volunteers receiving their sequence data. The film crew is now working to edit several 2-3 minute video stories to be released on-line as webisodes in advance of the film. Read more »
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