Chapter 13: Accessibility of Biological Data: A Role for the European Database Right?
Jasper A. Bovenberg INTRODUCTION One of the challenges in the post-genomics era is the study of common complex disorders (Collins, Green, Gutmacher and Guyer, 2003, 840). This type of research involves the study of links between genotype and phenotype; between abstract genomic data and concrete patient medical records. This, in turn, requires that collections of either type of data are accessible for those who were not its primary producers. The accessibility of genomic and phenotype data runs a spectrum. At one end are large-scale collections of abstract genomic data produced by publicly funded scientists. These data are widely accessible as funders require immediate, unrestricted and even pre-publication release. At the other extreme are small-scale collections of phenotype data made by individual scientists, typically in a hybrid clinical/research setting. These collections tend to be only conditionally accessible, as the primary producers often feel that they have earned an exclusive right to use ‘their’ collection of data concerning ‘their’ patients or subjects. Two unrelated developments might impact on the current degree of accessibility of the collections at either end of the spectrum. First, largescale projects are moving from assembling raw genomic data with little or no ‘utility’ in the patent sense of the law, to producing ‘functional data’ with increasing utility. The increased ‘patentability’ of these novel data may undermine the data release policies of these projects. Second, data in small-scale collections are increasingly being assembled by the research participants themselves. Consequently, traditional proprietary claims by individual researchers may come under pressure...
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