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 Subjects' DNA secrets to be revealedWeb postings may boost researchThe human ability to let it all hang out is about to reach a whole new level. Ten genome-era explorers assembled by a Harvard Medical School genetics professor are expected to announce today that they will post their medical records and the DNA sequence of about one-fifth of their genes on the Web for all to see. The 10 include the genetics professor himself, George Church; Harvard psychology professor Steven Pinker; and technology investor Esther Dyson - and they are leading the way for a hoped-for crowd. In April, Church's "Personal Genome Project" received approval from the university's ethical review board to sequence and post the genes and records of 100,000 willing subjects. The project aims to advance genome research by tapping volunteers who have a Facebook-mentality sense of privacy - minimal - and enough excitement about genomic science that they are willing to lay out their genetic and medical information so any researcher can sift through it for links between genes and traits. (Personally I would like to be able to recognize the DNA of the Facebook mentality.) "There's a hope that by making these data public, you can harness crowd-sourcing power in the same way that Wikipedia and YouTube and Google and Linux all emerged from cooperative, distributed efforts," Pinker said. The project's approach - its sense that genetic self-disclosure is not necessarily scary - contrasts sharply with the concerns about genetic privacy that recently prompted Congress to pass the Genetic Information Non-Discrimination Act, which bars insurers or employers from holding people's genes against them. Personal Genome Project participants voluntarily relinquish their genetic privacy for the sake of research - and out of curiosity about what will emerge. The idea, Church said, is that researchers need to explore how genes and environment interact to produce everything from disease to personality, and for that, they need both faster, cheaper DNA sequencing and great databanks of people's characteristics. "As far as I know," he said, "this is the first time an attempt has been made to put a collection of all those together in a way that anyone can access it." Interviewed by phone last week, several of the project's participants said they were committed to disclosing their gene information, even though they will have a last-minute chance to decline. They plan to talk about their results and decisions at a press conference this afternoon. They said they believed deeply in others' rights to genetic privacy, but they had good reasons to let go of theirs, and had the luxury of holding positions in life that left them unworried about potential discrimination. ( Thieves very rarely discriminate against individuals of position, when they choose to steal their identities. )
Halamka got his initial results yesterday, and said they suggested he could be at heightened risk for several diseases that have not in fact affected him, including a paralyzing neurological disease and tuberculosis. He also carries a single mutation that, if a person has two of them, doubles the risk of prostate cancer. So "today's disclosure changes the way, for the rest of my life, I relate to doctors in that if I have a change in PSA [Prostate Specific Antigen] or prostate exam, I'll be much more likely to follow it up. Doctors can be the worst patients." Halamka had a preparatory talk with his 16-year-old daughter, he said, telling her that his genes would be posted publicly and reminding her that half of her genes came from him. A future suitor of hers, he said, "could look at my data on the Web and say, 'You know, I just don't think this is a suitable life mate because look at the risk for this and the risk for that.' And her response was very mature, which was, 'If a prospective boyfriend evaluated me based on your genome, I wouldn't want him as a boyfriend anyway!' " Along similar lines, Rosalynn Gill, a founder of Sciona, a Colorado-based personal genetics company, said that part of her motivation for baring her genes was to make the point that "it's not just your genes that determine who you are." The project at this point, Church said, has sequenced only about 20 percent of the participants' genome regions that instruct cells how to make proteins, the tiny machines that make the body run. But it will ultimately scan all their genes, he said, and at a cost of $1,000 or $2,000 per person. It would be hard to calculate the sequencing cost for current volunteers, Church said, because the technology is still in the development stage. Attaining a "$1,000 genome" is the focus of hot competition in the DNA technology field, and Church co-founded a Cambridge company, Knome Inc., that offers to sequence a person's complete genome for $350,000. Many predict the $1,000 genome will be possible within a few years. Personal genome companies that already offer consumers data on hundreds of genes of interest currently charge about $1,000 or less, but they examine only myriad small chunks of their customers' genomes. There may be significant downsides to posting your genetic data on the Web, said Dr. David Altshuler, a leading genomics researcher at the Broad Institute and Massachusetts General Hospital. Would you really want your DNA and medical records to come up when a date or prospective employer Googles you? What if, in the future, an enemy can synthesize your DNA and plant it at a crime scene? But Altshuler said he welcomed the public debate that the Personal Genome Project will surely spark. "The project is forcing a societal discussion of what it would mean to put up your data - what uses it could be put to, and what limits it would have, and that's a very useful discussion to have," he said. To see the postings: http://www.personalgenomes.org Carey Goldberg can be reached at goldberg@globe.com. |
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