Editor—We think it important to respond to Kaye's letter concerning the proposed UK Population Biomedical Collection, a project sponsored by the Wellcome Trust, the Medical Research Council, and the Department of Health.1 Kaye suggests that the collection will be a test run for the establishment of a national population collection, but this may mislead readers.
The proposed collection will include DNA samples from roughly half a million adult volunteers, together with data on environmental and lifestyle risk factors and (in due course) health outcomes. Central to the proposal are requirements that informed consent must be obtained from all volunteers and that all information would be stored and analysed in a form that would not allow individuals to be identified by those conducting the research.
An independent body would oversee the collection and would be accountable to the public for ensuring that the data are used responsibly and within the terms of the consent obtained from the volunteers. It will be a collection held in public ownership for public benefit. We intend that methodology for obtaining reliable information on health outcomes from NHS electronic records will be piloted as part of the proposed study, but this is an independent research project and not linked to the establishment of any more extensive national collection.
We agree with Kaye that transparency, public consultation, and debate are vital to the success of this project. We have commissioned a series of public consultations to ensure that public attitudes towards the collection are clearly understood and taken into account during its development.2–4 In April two regional workshops were held with key opinion formers at local and regional levels in the NHS; a short report will follow.
Finally, Kaye rightly mentions “public consultation, consent, data security, access, and oversight mechanisms” as issues that need to be addressed in the establishment of a population collection. All these issues have been and will continue to be considered in the development of the collection, and we intend that the collection will be seen as an exemplar for future projects of this nature.
References
- 1.Kaye J. Report may lead to population collection by the back door. BMJ. 2001;323:632. doi: 10.1136/bmj.323.7313.632. . (15 September.) [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Public perceptions of the collection of human biological samples (www.wellcome.ac.uk/en/1/biovenpopcol.html or www.mrc.ac.uk/publicperceptions.htm).
- 3.Consultation with primary care health professionals on the proposed UK Population Biomedical Collection (www.wellcome.ac.uk/en/1/biovenpopfoc.html).
- 4.Use of biological sample collections and personal medical information in human genetics research (www.wellcome.ac.uk/en/1/biovenpop.html).