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13,000 offer up DNA to put their genomes online

Study among first to offer data to computer scientists

May 18, 2009 12:05 AM ET

Computerworld - Since opening to the public late last month, The Personal Genome Project has signed up 13,000 volunteers who will donate genetic material for the benefit of gene research worldwide. Information about the genetic material will also be posted online.

The project was launched last year with the goal of creating the world's first publicly accessible database of human genomic and trait data from 100,000 people. Initially, it started as a closed test study with 10 volunteers so that those who later sign up for the project "will know what they're getting into," said George Church, the Harvard Medical School professor leading the initiative.

Those first 10 volunteers had their genomes, along with photos and personal and family history, placed online as a pilot for the experiment, which one day could include millions of unique genomes.

Church said study participants have not been promised any anonymity -- just the opposite.

Participants are schooled on the fact that their private medical data, including any diseases or deformities, will be available for the world to view. And while Church acknowledged that will initially scare a some people off. But once people have gotten used to the idea of participating in medical research, "it's a fairly small additional step to say, 'Let's allow anyone at all to take a look at it.'

"We don't need that many people to enroll. One hundred thousand people out of 6.5 billion is a very tiny number of people," Church said.

The purpose of the public genome database is to offer up genetic information to the world's scientific community, including computer scientists, for the study of hereditary medical issues, according to Church. The project is among the first to allow researchers other than traditional medical doctors to use the data.

"I think there's a lot of opportunity for someone who looks at things differently to make connections that the so-called experts missed," he said. "So we're very excited about having participation of computer scientists, mathematicians, physicists and so forth."

Church believes that within a few years, everyone will have the opportunity to keep their own genome data -- and personal medical information -- in a personally-controlled electronic record. That valuable information becomes even more valuable when it can be shared with the scientific community in general.

"...If everyone shares, then suddenly it adds value to the resources everyone already has," he said.

The Personal Genome Project will focus initially on medical research. For example, Church and his team are interested in morphological characteristics, such as what makes a person's face the shape that it is.

"That doesn't sound like it's immediately medical, but things about morphology can affect whether you have sleeping or breathing problems," Church said. "We're trying not to be prejudicial in deciding in advance what's medical or not because there are opportunities for serendipity and holistic interconnections that computers can find that people may have missed because they're not as good at finding correlations."

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