The idea of making personal genetic information public evokes images of genomic Google searches and gene-testing job interviews straight out of Gattaca. But there are many who believe genetic openness could go a long way toward advancing disease research. Tomorrow, ten volunteers will take the first steps away from genetic privacy, allowing their personal genetic information to be posted online without the veil of anonymity.The volunteers are all participating in the Personal Genome Project, a Harvard study, which as we’ve mentioned before, is attempting to create a database of 100,000 human genomes. Although other services collect genomes as well, PGP has come to public attention for taking personal information in lieu of payment:
In exchange for the decoding of their DNA, participants agree to make it available to all — along with photographs, their disease histories, allergies, medications, ethnic backgrounds and a trove of other traits, called phenotypes, from food preferences to television viewing habits.
So what has prompted these volunteers to make so much of their personal lives publically available? Each possesses, in PGP head George Church’s estimation, the equivalent of at least a master’s degree in genetics, and many have an academic and/or financial interest in furthering genetic research: • George Church, PhD, Professor of Genetics at Harvard Medical School, Professor of Health Sciences & Technology at Harvard and MIT, and head of PGP. • Esther Dyson, technology entrepreneur and commentator, philanthropist, and future space tourist. • Misha Angrist, PhD, Science Editor at the Duke University Institute for Genome Sciences & Policy and author of The Genome Revolution: DNA, Health and Society. • Keith Batchelder, MD, founder and CEO of Genomic Healthcare Strategies. • Rosalynn Gill, PhD, founder and Chief Science Officer of Sciona. • John Halamka, MD, MS, Chief Information Officer of the CareGroup Health System and Chief Information Officer and Dean for Technology at Harvard Medical School. • Stanley Lapidus, Chairman and CEO of Helicos BioSciences Corp. • Kirk Maxey, MD, manages the Donor Sibling Registry and the Cayman Biomedical Research Institute. • James Sherley, MD, PhD, Senior Scientist at the Boston Biomedical Research Institute. • Steven Pinker, PhD, Johnstone Family Professor of Psychology at Harvard University. While the “PGP 10” understand the benefits and consequences of posting this sort of information online, some fear that those who follow their lead won’t be so savvy:
“I’m concerned that this could make it seem easy and cool to put your information out there when there is still a lot of stigma associated with certain genetic traits,” said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University. “There will be new uses of this data that people can’t anticipate — and they can’t do anything to get it back.”
But some have already been lured in by PGP’s promise of a free genetic screening, which could tell them if they are predisposed toward certain diseases. In the latest issue of GQ, University of Illinois professor Richard Powers shares his own journey through PGP’s gene mapping process, including his decision to join the genetic database and what the geneticists found. [Personal Genome Project] Taking a Peek at the Experts’ Genetic Secrets [NY Times] The Book of Me [GQ]