Jeantine Lunshof

Title: Redefining privacy: public genomes & open consent

We are used to defining privacy in terms of something that is to be protected: privacy of individuals as the object of concern, in need of strategies to protect it from harm from outside. For some time, we have been holding the belief that ‘genetic privacy’ is an exceptional case deserving a particularly high degree of protection.

Recently, individual human genetics has been aquiring an extension in the form of personal genomes and in the Personal Genome Project (PGP) these were designed as public genomes. Public genomes imply a redefining of privacy: privacy as shaped by the individual’s decision about information sharing and not by the well-intended concerns of others. In the PGP, open consent documents the decision to publicly share personal information with the awareness that anonymity does not exist. The accessibility and the sharing of personal genome and phenome data in the public playground of internet require a rethinking of normative concepts and long-held beliefs.