Eight of the ten volunteers. Back row (left to right): James Sherley, Misha Angrist, John Halamka, Keith Batchelder, Rosalynn Gill. Front row (left to right): Esther Dyson, George Church, Kirk Maxey. Source: Personal Genome Project
Boston, MA, Oct. 19—Ten volunteers are preparing to share with the world what is arguably their most personal possession: their decoded DNA, along with medical history, ethnic background, and other traits. These pioneers are participating in the Personal Genome Project (PGP), a Harvard University–based research group whose initiative is to provide more openly available genetic information in order to further genetic and medical research.
Because the common issues surrounding privacy have been sidestepped by gaining complete consent from the “PGP 10,” as they call themselves, the database—which the project hopes to expand to include 100,000 participants—will include phenotypic information, which has typically been avoided in other databases due to privacy concerns. Complete, open access to this type of data is expected to help researchers better understand how outward traits and genes are linked.
In allowing the partial genomes of the 10 volunteers to remain openly accessible, the PGP hopes to also confront the stigma surrounding the concept of a public genome. It is, as the New York Times aptly described, “[a]s much a social experiment as it is a scientific one.” Dr. George M. Church, a human geneticist at Harvard, who is the leader of the PGP and also a participant, concedes that it is unknown how the availability of this information will affect its participants. “We don’t yet know the consequences of having one’s genome out in the open, but it’s worth exploring,” he told the Times.
Others are not so swift to agree. “There will be new uses of this data that people can’t anticipate,” said Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, “and they can’t do anything to get it back.” Stephen Mercer, a Rockville, MD–based lawyer specializing in the intersection of DNA and civil liberties, told the Washington Post that he fears publicizing people’s genomes will cause others to make gene-trait associations that are not scientifically sound. “That’s the real unstated danger here,” he said, “that it will be a launching pad for behavioral human genetics, in the search for genes that dictate personality traits, coyness, anxiety, family conflict, sexual orientation.”
Church asserts that with this information, more people will be able to respond appropriately to diseases for which they are at risk, and doctors can use disease-gene associations to provide better, more personalized treatment. “We’re treating people like one size fits all, like anybody can work in an asbestos factory, anybody can eat peanuts, anybody can take this new antibiotic. It’s just not true,” said Church to the Post. However, though a recently passed federal law prohibits insurance companies and employers from discriminating on the basis of genetic information, analogous laws do not yet exist for long-term health, disability or life insurance policies, leading many to be concerned about how publicized genetic information will influence future insurability.
Though dissenting opinions on the appropriateness of a person’s complete, public genome are widespread in response to PGP’s approach, the 10 volunteers’ full genomes are far from being completely sequenced: the privately-funded project is focusing on only a handful of genes that seem to have the most influence over disease, behavior, and physical traits. Sequencing an entire genome costs about $5,000, down from about $1 million two years ago, making consensus on the virtue of genetic privacy an increasingly pressing goal as the cost continues to fall.
But the argument surrounding privacy may prove to be moot, after all. In a paper published August 29, 2008, researchers from the Translational Genomic Research Institute and the University of California-Los Angeles determined a method for identifying a single individual’s DNA from within a complex mixture of anonymized genomic data. This finding, as reported by BioTechniques in September, prompted the National Institutes of Health to block access to two formerly public databases.