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Boston researchers to reveal their genetic secrets
Anna Kushnir
Monday, 20 October 2008 21:33 UTC
Both the New York Times and the Boston Globe report on an initiative by a group of leading researchers in genetics and beyond to push the boundaries of privacy by making their complete genome data available to the world.
From the NYT:
“The goal of the project, which hopes to expand to 100,000 participants, is to speed medical research by dispensing with the elaborate precautions traditionally taken to protect the privacy of human subjects.”
The Personal Genome Project is headed by George Church, a professor of Genetics at Harvard Medical School and a leader in the field of genome sequencing. Curiously enough, Church “required the first 10 participants to demonstrate the equivalent of a master’s degree in genetics” to be sure that they are aware of the risks and benefits of revealing their genetic code. Church’s genetic code, and that of the other nine participants (including prominent Harvard psychologist Stephen Pinker and Esther Dyson, a technology venture capitalist) will soon be made available at a public website, personalgenomes.org.
If you had the opportunity to find out what your genome holds, would you take it? Would you let others in on the secret? The benefit to science of revealing individual’s genetic code will become clear in the years to come, but is it necessary to publicly associate the name with the genes?
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Replies
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I didn’t realise my talk on Monday was very relevant to this post. What a strange coincidence.
I think that Pinker has been very savvy in withholding data, as posting all of your data could affect siblings and progeny of the data donor.
There’s currently a moratorium on insurance companies using this data until 2014, but who knows what will happen after this date. If you have a BRACA or MLH1 mutation which can be conferred to your children, would you risk opening that Pandora’s data box?
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Hi Friends,
This is a topic with pros and cons equally set. It will be in our hands(regulation on its use and applications) on how it is used.
Genome data in wrong hands could be of considerable concern. On the other hand, it could cause a revolution like open source software. It can help researchers to use it freely and create cures to diseases like cancer.
Bottomline, it is in our hands how we use it.:)..
I quest your reply.
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