Study will not be started before suitable arrangements are in place
- Tom Meade (Susan.J.Matthews@mds.qmw.ac.uk), director
- Medical Research Council Epidemiology and Medical Care Unit, Wolfson Institute of Preventive Medicine, St Bartholomew's and the Royal London School of Medicine and Dentistry, London EC1M 6BQ
- Clinical and Molecular Genetics Unit, Institute of Child Health, London WC1N 1EH
EDITOR—As chairman of the expert planning group set up by the Medical Research Council and Wellcome Trust, I can reassure readers of the article by Kaye and Martin that all the issues they raise about the proposed population study in the United Kingdom involving genetic information have been fully recognised.1 The study will not and cannot be started until arrangements acceptable to all concerned are in place. These arrangements are currently being actively developed and entail consultation with lay and professional advisers.
The two main reasons behind the high degree of public concern and debate about the study in Iceland were the initial proposal for an “opt out” approach to consent for collection of some of the data and the decision to license the databases exclusively to a commercial company. Neither of these has ever been considered as a possibility in the British …