2 - State/Signal Systems: Trajectories, Transformations, and Interconnections

Summary

Chapter two considers the interwoven interests of individual participants, collectives interests and the wider public interests in research using linked data. The chapter discusses the research participants interests including dignity, autonomy and privacy and the traditional approaches to protecting them — consent and anonymisation — and concludes that these do not operate to effectively to protect individual interests in this context. Research using linked data can also have impacts, both beneficial and harmful on others, including socio-demographic groups, disease groups and the wider community and these should be explicitly recognised and evaluated by decision makers. The current legal and ethical regulation of data linkage research are critiqued for being too individualistic and alternative approaches are discussed.