Genome Database Will Link Genes, Traits in Public View

George Church says his project could tell participants what diseases might lurk in their future.
George Church says his project could tell participants what diseases might lurk in their future. (By Ellen Nakashima -- The Washington Post)
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By Ellen Nakashima
Washington Post Staff Writer
Saturday, October 18, 2008

BOSTON -- George Church wants to put his personal genetic blueprint online for all to see -- the sequence of chemical bases that make him who he is, a lanky scientist of Scottish ancestry who has dyslexia, narcolepsy and motion sickness.

And he wants 99,999 other people to follow suit.

The Harvard genetics professor's Personal Genome Project is an attempt to build the only public genomic database that connects genes with diseases. With it, he believes, scientists could correlate more easily many millions of genetic variants with medical and other traits, from asthma to acne, eye color to perfect pitch.

If successful, he says, it would usher in an era of "personalized medicine" -- enabling a consumer to order up his own genetic blueprint and know what diseases might lurk in his future. That could allow him to change his lifestyle to try to avoid them. Or climb K2 now, while he still can.

A better understanding of genes could lead to more effective drugs, proponents say. Couples could learn what diseases might be in store for their children and decide not to have them. Eventually, they say, scientists might even be able to alter the dangerous genes.

But other people consider Church's vision the darker side of genetic knowledge. Such a database could be used against the participants. Insurance companies might refuse to sell them life, disability or long-term care coverage. A child could learn she faces a terrible disease. In a more far-fetched but still possible scenario, a criminal could craft synthetic DNA using someone's genetic code in the database and place it at a crime scene to frame that person. In a broader context, people might draw spurious links between genes and criminal behavior.

The database, a nonprofit venture, is scheduled to go online Monday, when Church and up to nine other volunteers -- the "PGP 10" -- will release their genomic data and traits profiles to the public. Then anyone, from a university researcher to a kid working in a basement lab, will be able to tap into the data and create research applications much the way that Facebook allows vendors to create game applications. It has enormous potential to help consumers control their health, proponents say, but critics say the risks outweigh the potential benefits.

"If people are concerned about what will happen, then they probably shouldn't be involved," said Church, 54. "We are recruiting people who are willing to have their data in the public domain because there's a pretty good chance that it will be public, whether you like it or not. So if you recruit people who are okay with that, then it's less likely that they'll be shocked and alarmed when it happens, if it happens."

But Stephen Mercer, a lawyer in Rockville who specializes in the intersection of DNA and civil liberties, said the trend opens the door to touting associations not based on sound science. "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."

Mercer said he could envision companies marketing genetic screening kits to prospective parents who might consider aborting a fetus, much like in the science fiction movie "Gattaca," which depicts a future in which humans are engineered for perfection. "Why have a kid who's over-anxious?" he said. "Why have a kid who's too impulsive? Why have a gay kid?"

As Church sees it, however, if people have their genes sequenced, more data will be available for valid associations. More people will also be able to figure out what diseases they are at risk for and take action, by changing their diet or lifestyle or by using medication. With more disease-gene associations, advocates say, clinicians can make earlier and more accurate diagnoses, and pharmaceutical companies can make more effective drugs.

"This is what I consider one of the most practical things we can do," said Church, who is 6 feet 4 inches tall, a vegan and has had a heart attack. "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."

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