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Paper long abstract:

This presentation is based on the on-going observation of the development of open source software (DataSHIELD) to facilitate secure data analysis in the biomedical sciences. DataSHIELD is a technology that offers an alternative to the traditional means by which data is shared by cohort studies for meta-analysis. It is foremost a technical response to the ethico-legal problem of sharing data about individual participants in the studies.

Existing ethical and legal discussions about data sharing are often given in terms of concepts such as privacy and confidentiality. In the early stages of development however the technological 'solution' that DataSHIELD offers was shown to transform concerns with privacy and confidentiality into concerns with technological security (Murtagh et al 2012).

This presentation will examine how, as the DataSHIELD technology continues rapid development, its implementation and infrastructure is shaped by concerns with data security and access control. The presentation will briefly discuss the way the DataSHIELD technology addresses the ethico-legal problems of data sharing, but primarily examine the new ways that DataSHIELD changes how those issues arise and how they are framed in terms of technological security and access control.