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  • Cited by 1
  • Print publication year: 2007
  • Online publication date: August 2012

9 - United Kingdom

from Part II - Social concerns

Summary

In June 1999 a proposal for a UK-wide biobank (comprising a collection of DNA data, medical records and lifestyle information) was announced by a funding consortium comprising the UK Department of Health (DoH), the Medical Research Council (MRC) and the Wellcome Trust (WT). The idea they then presented was to use information collected from 500,000 volunteers, aged between forty-five and sixty-nine, as a resource for research into common multi-factorial diseases that affect people in later life. It is known that these are medical conditions that may be caused by a complex range of genetic and other factors.

The UK Biobank (as it was later named) received funding in 2002, but prior to the launching of the project a considerable amount of research and consultation was carried out by the funders and by the Government's advisory body the Human Genetics Commission (HGC) to determine public perceptions in relation to current advances in medical genomics and, more particularly, in relation to the setting up of UK Biobank. For instance, a major public consultation was undertaken (during 2000–2001) by the HGC on the future uses of personal genetic information. As part of this consultation they commissioned a quantitative survey of public attitudes to human genetic information. At the same time the UK Biobank partners – the MRC and the WT – commissioned their own consultation. They carried out a programme of qualitative focus groups and interviews to inform their guidelines and principles (the protocol) governing use and collection of data.