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Those who are hesitant about publicly
sharing any part of their genome data, including medical history, physical
traits, or personal preferences, should think twice before they agree to
participate in the genome project.
On the other hand, the role of each individual
who decides to share his DNA sequences and personal information with the
research community and the general public is crucial in making this project useful.
Researchers and scientists at Harvard Medical School
said the Personal Genome Project is the first step of a major initiative to make
personal genome more accessible and to create a resource for researchers
investigating the genetic basis of diseases.
The first 10 volunteers, nine researchers and
a science editor at the Duke University Institute for Genome Sciences &
Policies, had the choice to withhold their genome data after seeing it, but
they all decided to go forward and share the private information. John Halamka,
CIO for Harvard Medical School,
for example, found that he carries a mutation for a rare childhood neurological
disease, hereditary motor and sensory neuropathy with optic atrophy. He said
that there is a great advantage of knowing his sequences because this
information could help him when he has a physical examination.
The Harvard team ultimately hopes to
recruit 100,000 people to share their DNA sequences and personal medical
information to help research. The researchers are creating cell lines made from
participants’ skin cells, which will be distributed to scientists around the world
to help research.
For more information about the project,
visit www.personalgenomes.org.
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