Author ORCID Identifier
Researchers today have access to a vast aggregation of human and nonhuman genomic data, largely on an open access basis. According to the Joint Genome Institute’s Genomes OnLine Database (GOLD), data from more than 40,000 sequencing projects around the world, representing more than 375,000 different organisms, were publicly available to researchers as of July 2020. The availability of this tremendous public resource is due, in large part, to the data release policies developed a quarter century ago, toward the beginning of the Human Genome Project (HGP), which have been carried forward, in modified form, to the present. These policies impose requirements on both the generators of data (typically the sequencing centers and other laboratories conducting genetic experiments) and the users of that data (i.e., researchers who download and/or use it). This chapter, briefly outlines the history of such data release policies, particularly in the U.S. and with respect to human genomic data, and provides an overview of the obligations imposed on both data generators and data users.
Bioinformatics, Medical Informatics and the Law, Jorge L. Contreras, A. James Cuticchia & Gregory Kirsch, eds., Edward Elgar (2021)