The personal Genome Project was created in 2006 to try to answer the question of the nurture vs. nature debate. Latanya Sweeney and her colleagues at Harvard were able to take the participants’ anonymized data and identify them with a 97% accuracy rate. While the project never guaranteed participant privacy, they have been proactive since Sweeney revealed the results of her research.
This kind of vulnerability is well-known. “Our ability to learn their names is based on their demographics, not their DNA, thereby revisiting an old vulnerability that could be easily thwarted with minimal loss of research value,” say Sweeney and pals.
They point out that the way to solve this problem is to include birth dates and zip codes that are less precise, giving just a year of birth or the general area of residence, for example.
This isn’t so easy to change on the PGP website so the team have created a freely available editing tool that allows any participant to modify his or her details on the website in a way that reduces the chance of identification.
Although PGP had never guaranteed anyone’s privacy and the participants knew this, PGP still made the correct and responsible step of helping protect participant identity. Allowing these minor changes will enable the PGP to protect the privacy of its volunteers just a little bit more.