Monday, October 20, 2008
BOSTON —A group of scientists and researchers fascinated with the human genome said Monday they will post online their most private personal information _ their medical records and DNA sequence of some of their own genes _ all for the sake of research.
Led by Harvard Medical School genetics professor George Church, nine people plan to post their records and the DNA sequence of about one-fifth of their genes on the Web.
The participants also include Harvard psychology professor Steven Pinker and Dr. John Halamka, chief information officer at Harvard Medical School. A tenth participant, Misha Angrist, science editor at the Duke University Institute for Genome Sciences & Policy, said he plans to make his medical records public, but is still deciding on whether to make his sequencing information public.
Harvard said this is the first phase of a major initiative to make personal genome sequencing more affordable and accessible.
The release is part of the "Personal Genome Project," which is designed to serve as a resource for researchers investigating the genetic basis of diseases and other traits.
Members of the group received the protein-coding regions of their genomes Monday. After reviewing the information with a doctor, they were given the option of sharing it with the research community and general public by posting it on the project's Web site.
Participants discussed their decisions at a news conference at Harvard on Monday afternoon.
Halamka said his results showed he could be at an increased risk for several diseases, including prostate cancer and a neurological disorder that causes weakness and numbness in the legs. He said knowing he has an increased risk could help him when he has a physical examination.
"I think as a family we will now approach our care a little differently," he said.
Participants said they decided to make their information public to help medical research.
"I believe that there's a great advantage to each of us knowing our sequences, but it is also to me inconceivable that absolute genetic privacy will be maintained," said Stanley Lapidus, chairman and CEO of Helicos BioSciences Corp.
Earlier this year, Church's project won approval from Harvard's ethical review board to sequence and post the genes and records of 100,000 willing participants. Church later asked nine people to participate in the first stage of the project.
On Tuesday, the Personal Genome Project's Web site will post the DNA sequences, cell lines, and medical and non-medical traits of participants who agreed to disclose their information. Anyone with access to the Internet can view the information.
Concerns about genetic privacy prompted Congress to pass the Genetic Information Nondiscrimination Act, which prohibits insurers or employers from discriminating against people based on their genetic information. The act was signed into law in May.
So far, the project has sequenced about 20 percent of the genome regions of participants, but it will eventually scan all their genes.
Last year, DNA pioneers J. Craig Venter, president of a genetics research institute, and James Watson, co-discoverer of DNA's molecular structure, made their genomes public on scientific Web sites.
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