Creation and governance of human genetic research databases

the long version

Large-scale study of populations may contribute significantly to science’s understanding of the complex multi-factorial basis of disease and to improvements in prevention, detection, diagnosis, treatment and cure. This book summarises the proceedings of a conference on human genetic research databases.  It examines what they are and provides a number of examples. It looks at how they have been established, governed, and funded. And it looks at how they are managed and commercialised, exploring what the policy implications are for governments.