Why keep secrets? The 12 bloggers at Genomes Unzipped (an interesting genetics blog I didn’t know about till just now) are releasing their genetic data, mainly 23andme results, to the world. Daniel MacArthur writes that the need to keep genetic data private makes valuable data-sharing difficult, so he and his friends are making a gift to science: The raw data is here. They also plan to release any software they create.
I liked his point that genetic privacy is overrated anyway, when you shed hair and skin everywhere you go.
A similar, more ambitious effort is the Personal Genome Project, which aims to build a repository of 100,000 individuals who have decided to share their data. (They’re up to 10 so far. [Update: now it's 1,000]) That project’s privacy statement includes the reverse idea: that if someone has your genetic data, it’s not so hard for them to know who you are.
We question the long-held belief that research endeavors involving human genome sequencing can guarantee, in perpetuity, the confidentiality or anonymity of the information revealed from a personal genome sequence. For example, it is becoming easier to glean personally indentifiable knowledge from DNA sequences, including hair and eye color, height, and facial features. Protecting the identity of indviduals is particularly difficult while the number of personal genome sequences existing in the world is small.
Anyhow, I’m reading this as I sit at home watching the twitter feed (#bgt2010) for Beyond the Genome, a conference in Boston about “the true gene count, human evolution, and disease genomics.” Sounds like fun!