The role of voluntary consumer organisations in genetic services in the United kingdom

This article describes the role of the Genetic Interest Group (GIG), a UK alliance of charities and voluntary groups for families affected by specific genetic disorders, as an advocate for the needs of patients and their families and as an agent of change in the development of genetic services in the UK. GIG now interacts with a wide range of audiences - lay groups, the professional community, policy makers, government and the media - in a variety of different ways, so that the perspective of the 'end user' is reflected in decisions about the application of the new genetics in the field of human health.