Although participants need not be explicitly identified, integrated data sets that include both genomic and phenomic data will be identifiable in most cases. For this reason,

participants must be made explicitly aware of the probability that they will be identified with their publicly available data, rendering promises of perfect privacy, anonymity, or confidentiality impermissible within the public genomics model. However, the promise of privacy need not give way to a promise of publicity. Open access Data sets and tissues are made publicly available with minimal or no access restrictions Inhibitors,research,lifescience,medical (including researcher qualifications and cost), and are generally transferable outside the original research study to be utilized by and combined with data from third parties. Well-developed data structures and intellectual property licenses are important components of Inhibitors,research,lifescience,medical this characteristic. Developing datasets that are not only publicly available but also easily portable fosters the development of a genomic commons, allows data validation by third parties, and enables the use and application of data in novel contexts that may not be foreseeable at the time of collection, thereby facilitating hypothesis generation, encouraging serendipity and broadening the genomic Inhibitors,research,lifescience,medical research community. Voluntary and informed participation Satisfaction of the first two criteria

publication of an integrated dataset in an open-access format necessitates that a premium be placed on receiving truly voluntary and informed consent from participants in public genomics research projects. Given the yet-unknown outcomes and the potential Inhibitors,research,lifescience,medical personal, familial, and social risks associated with such research, enrollment is only acceptable under an informed consent protocol that is specially designed to meet the highest standards of human research subjects Inhibitors,research,lifescience,medical protection in view of these FHPI price conditions. The study protocol The PGP aims to produce public genomics research – and to develop and evaluate associated technologies and research – on a large and expanding scale. In October of 2008, the PGP published the first integrated set of DNA sequences,

traits, Thalidomide and tissues collected from ten participants (the “PGP-10”) enrolled in a pilot study initiated in 2005. Today, the PGP is incrementally expanding its cohort toward 100 000 participants. More than 12 000 individuals had registered to participate in the PGP as of February 2010. In the following section we highlight significant features of the PGP study protocol as it is implemented for the enrollment of the first 100 participants (“PGP-100”) and summarized in Table V. Table V Overview of PGP study protocol Public genomes: adding to ELSI The practice of public genomics poses its own challenges, especially for the organization and governance of human subjects’ research, forcing us to critically reassess current frameworks and practices.