In the news

The Wellcome Trust and the Medical Research Council have published the results of a public consultation designed to inform the development of BioBank UK, a prospective study to correlate genetic, medical and lifestyle information for a cohort of 500,000 volunteers aged 45-69, with the aim of identifying gene-environment interactions that are important in susceptibility to common disease. Three groups of 20 people each, in Hertfordshire, the West Midlands and Glasgow, were given an introductory presentation about the project and participated in a subsequent interactive workshop. A number of issues emerged from the consultation. For example, it will be important that the goals and rationale of the project are explained clearly at the time of recruitment, as some people did not at first realise that participation would bring no individual health benefits (or disbenefits) to them. Many people will need to be convinced that the importance of the project justifies their participation. Similarly, the reasons for allowing commercial access to BioBank need careful justification. There was general agreement that security of the samples, and privacy and confidentiality of the information, are vital, but nevertheless a majority felt that access by police for forensic purposes would be acceptable if a court order were made. Interestingly, most people in this sample were not particularly worried about the prospect of research on psychiatric or behavioural characteristics. The company commissioned to carry out the consultation recommends that the same groups of people should be consulted further as plans for the project advance, and also that additional groups in areas with a more disadvantaged socioeconomic profile should be consulted. The full report of the consultation is available on the Wellcome Trust’s website. A decision on funding for the BioBank project is expected this spring.