Transparency and genetic risk information: can it work?

This abstract is part of the symposium: ''Beyond Infotopia: Contextualising Risk, Openness and Transparency in the Information Age'' Convenor - Jamie Wardman Transparency has become a key objective of Public Policy.... [ view full abstract ]

This abstract is part of the symposium:

''Beyond Infotopia: Contextualising Risk, Openness and Transparency in the Information Age''
Convenor - Jamie Wardman

Transparency has become a key objective of Public Policy. Transparency is expected to increase government accountability as well as supporting citizens’ decision making, which are two main reasons why this concept has become so popular in policy circles. It is expected that, eventually, more Transparency will deliver higher levels of trust in government. Transparency initiatives have been spreading to an increasing number of risk domains, from crime prevention to food safety and clinical trials. Could the de-coding of the Genome be one of the next frontiers of Transparency? The promises of using personal genetics in predictive and precision medicine has led to a surge of genetic risk information provided not only to patients – usually through the mediation of healthcare professionals – but to virtually anyone – e.g. via companies offering their services online. The impact that such information could make on people, however, remains unclear. Do citizens always want to know? Or should they also have a right not to know? Who releases the information and what impact can it make? What should be the role of the Government, in particular can a ‘’Transparency policy’’ be devised for Genetics? To address these issues, the paper will draw on findings from over 30 elite interviews as well as quantitative research developed in the context of the ‘’MindTheRisk’’ project supported by the Swedish Foundation for Humanities and Social Sciences.