Want to Know Steven Pinker’s Genome?

October 21st, 2008

Posted by: admin

The Personal Genome Project is looking for a few thousand people willing to contribute their genome to help make personal genome sequencing more accessible and affordable.  The Washington Post recently reported on the project, as did Wired.  I think collaborative experiments and research like this – which could engage with people who aren’t researchers just as easily as researchers – is a good thing and should be encouraged.  As the amount of data we can use to conduct research increases dramatically, collecting and analyzing it – at least in some disciplines – will benefit from the contributions of others – whether its spare cycles on their computer or individual data to help better understand population data.

The problem with the Post piece – which focused on the recent addition of several scientists personal genome data to the publicly available portion of the project – is that it glosses over the critical privacy concerns that must be part of any database that can be accessed by the public, especially those that contain medical information.  Contrary to what you might think from the article, people can participate in the program and limit the exposure of their personal genetic information.  Online does not automatically equal no privacy.  Arguments that suggest privacy no longer exists, or can no longer be preserved, are arguments from technological determinism – that there is nothing we can do about technology and its momentum. If that were true, the utility of technology policy would be next to nothing – something that doesn’t reflect reality.

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