From the MIT Technology Review:
One of the biggest questions in biology is the nature versus nurture debate, the relative roles that genetic and environmental factors play in determining human traits.
In 2006, George Church at Harvard University and a few others started the Personal Genome Project (PGP) to help answer this question. The goal is to collect genomic information from 100,000 informed members of the public along with their health records and other relevant phenotypic data. The idea is to use this information to help tease apart the relative contributions of genetic and environmental factors.
The project does not guarantee privacy for those who sign up. Indeed, the participants can reveal as much information as they like, including their ZIP code, birth date and sex.
However, the data is ‘de-identified’ in the sense that the owners names and addresses are not included in their profiles on the PGP website and this generates a veneer of privacy.
Today, Latanya Sweeney and colleagues at Harvard show that even this is practically useless in keeping owners identities private. They say a relatively simple comparison of the list of PGP participants with other databases such as voter lists reveals the identity of a significant number of them with remarkable accuracy.
Read more on MIT Technology Review.