Genome fanatics share their DNA sequences

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Genome fanatics share their DNA sequences

'Personal Genome Project' designed to serve as a resource for

researchers

http://www.msnbc.msn.com/id/27295659/

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 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

Pinker and Dr. 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.