This article draws upon findings from an interview study with twenty-three families about participation in a large-scale population genetic database called, "Generation Scotland: The Scottish Family Health Study" (GS: SFHS). GS: SFHS aspires to become a DNA identification vehicle for the...

Modern biosciences require governance frameworks capable of simultaneously managing risk, coping with uncertainty, combatting ambivalence, and building trust, while encouraging the delivery of those instrumental outputs that we value/demand. This multi-dimensional task makes the design and...

This paper is the second in a series addressing information governance challenges in health-related research involving patient data and it is set against the current legislative and common law landscape within the UK. In Working Paper No.1 we described the diverse actors, regulatory bodies and...

This paper has been prepared as part of the governance work stream of the Scottish Health Informatics Programme (SHIP). It is intended as a platform for discussion and further elaboration with colleagues and those interested in issues surrounding the governance of secondary uses of health data...

This paper has been prepared as part of the governance work stream of the Scottish Health Informatics Programme (SHIP). It is intended as a platform for discussion and further elaboration with colleagues and those interested in issues surrounding the governance of secondary uses of health data...

Children's differing socio-economic, cultural and familial circumstances and experiences are part of the pathways implicated in health and illness in adulthood. However, in the existing, mainly survey based, work children's own voices tend to be absent and adult-defined data about health and...