The New Biology
Queen Mary Studies in Intellectual Property series
Edited by Matthew Rimmer and Alison McLennan
Chapter 6: The 1000 Genomes Project
Donna M. Gitter Scientiﬁc discourse and progress depend upon the open discussion of ideas and full disclosure of supporting facts.1 This discussion has traditionally occurred through the process of publication, which is the primary means by which scientists achieve recognition for their work.2 Traditionally, researchers published papers that combined in one entity both their ideas and the underlying data. With the advent of large-scale and high-throughput data analyses, however, the creation of scientiﬁc databases replaced the traditional model. Typically, for such data-intensive projects, funding agencies require that all relevant data must be made available on a publicly accessible website at the time of the paper’s publication.3 The Human Genome Project (HGP), completed in 2003, demonstrated to the scientiﬁc community that making data broadly available before publication results in valuable beneﬁts to the public. This is particularly true where there is a community of scientists who can use the data more quickly than the data producers themselves, and in ways not originally anticipated at the outset of the project.4 One successor to the HGP is the 1000 Genomes Project, which provides that project data will be released quickly, prior to publication, into the public domain.5 While the open access approach of the 1000 Genomes Project is the norm for large-scale, publicly funded genomic databases, many smaller projects that likewise produce vast amounts of scientiﬁc data nonetheless do not embrace data sharing. Quite often, researchers involved in ‘small science’, meaning research ‘performed by individual investigators or small...
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