A Critical Examination of Policy-Developments in Information Governance and the Biosciences

Abstract

This chapter provides a contextualisation of policy developments in the biosciences, health-research and information governance in relation to societal tendencies. The initiatives considered include the Clinical Research Practice Datalink, the Health and Social Care Information Centre, the 100,000 Genome Project, the introduction of personalised medicine, and the relaxation of the information governance regulatory regime. It is argued that we are witnessing a shift from rights-based approach to the adjudication of competing claims, in which benefits to the economy, for example, are seen as goods to be balanced with a data subject’s right to privacy and confidentiality. The greater weight that economic interests now possess in information governance and the biosciences has substantive implications for future policy in this area. This, along with the new powers of access by the Government, moves us into unexplored terrain and generates novel ethical challenges. Though, this chapter advocates an approach to policy and governance that proceeds along deliberative and democratic lines, the developments of concern to this chapter are evidence of the challenges that lie ahead.