GGD

The purpose of this project is to develop models for the governance of human genetic databases in England and Wales. However these will only be useful to researchers and clinicians if they are based on an understanding of current practice and the current law, as well as regulatory theory and normative principles... The growth in genetic research has led to the establishment of a variety of genetic databases with different purposes, such as UK Biobank, ENSEMBL and sample collections established for single research projects. Despite this growth, there are no accepted definitions of ‘genetic databases' and no clear or accepted models for their organisational, procedural or security mechanisms to be found in the law, guidelines or codes of practice of England and Wales. Currently researchers and clinicians have to ‘re-invent the wheel' when creating genetic databases, and often rely on the shared cultural practices of their professions to develop structures and procedures for managing..

Primary location: United Kingdom