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As part of their project on http://www.personalgenomes.org, a
group of enthusiastic scientists and researchers are taking the first step in
what they believe will be a move that will greatly help the development of
genetics and genome mapping. They stated on Monday that ten of them, led by Harvard Medical School
genetics professor George Church, are going to publicly post information about their
medical records and a partial genome map covering about a fifth of their genes.
The ten participants, nine researchers and a science editor
at the Duke University Institute for Genome Sciences & Policy, comprise the
first phase of the program which has been approved by Harvard's ethical review
board earlier this year. The program ultimately aims to sequence and publicly
post the genes of about 100,000 informed participants.
The goal of this program, according to Harvard, is to make personal
genome sequencing more affordable and accessible.
Aside from that, Church hopes that the project will spark
more general interest in the field of genetics. “This will allow anyone to look
at the human genome and correlate variations with individual human traits,”' he
said. “I'm hoping we'll attract amateurs, like amateur astronomers looking for
meteors, who will find new breakthroughs or get the next generation of kids
excited.''
Church says that the importance and potential impact of
having such vast and readily available genetic data, linked with personal
traits such as height, weight, ethnic background and such cannot be stressed
enough. It opens up vast possibilities for advances in medical science.
Nevertheless, he does admit that genetic oversharing could be dangerous, as
participants could find themselves facing discrimination by health insurance
companies or potential employers, if they knew they were predisposed to certain
illnesses.
"Some of them know they're going to get hurt, like
astronauts and mountain climbers," Church says. "But if enough of
them see a benefit to themselves, their families, and society, then it will
keep growing."
Precisely such concerns have prompted Congress to pass the Genetic
Information Nondiscrimination Act which prohibits insurers or employers from
discriminating against people based on their genetic information. The law has
passed into effect since May.
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