Today’s Wall Street Journal featured an article on Children’s Hospital Boston’s Gene Partnership Project (GPP), a new program in which all patients entering Children’s will eventually be able to take part in genetic research—as active partners. That’s the goal of the Gene Partnership Project where patients give a DNA sample and can then opt to receive the results of studies relevant to them, through specially crafted software that protects their anonymity.
All this is a far cry from the usual research situation, in which DNA samples are collected for a single, one-time study, and participants are never told about any information gleaned from their submitted samples. Typically, once their blood is drawn or saliva spat into a cup, specific information is extracted by researchers, logged into a database and patients never hear from the study’s coordinators again. As the GPP continues over the next several years it will be interesting to see if and how its unique stance on data sharing will shape the future of this type of research.