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The UK Population Biomedical Collection: lessons from Iceland?
In a paper in the Education and Debate section of the BMJ, Kaye and Martin argue that the original proposals for regulating the operation of the UK Population Biomedical Collection (a database of DNA samples and medical and lifestyle information on half a million adult volunteers) may not be adequate [Kaye, J. and Martin, P. (2000) BMJ 321, 1146-1149]. They point out that the Icelandic Government has taken steps to ensure that the controversial Icelandic Health Sector Database, which will contain medical records linked to genealogical information, will be overseen by two new Committees: a Monitoring Committee and an Interdisciplinary Ethics Committee. These committees will be charged with ensuring that deCODE, the company given exclusive rights to the information in the Database, conforms to the terms of its licence. In contrast, Kaye and Martin point out, because scientific and medical research in the UK runs essentially on a self-regulation system, "the funders of research, the managers of the database, and the regulators can be the same institutions". They argue that, if the public is to have confidence in the database, it may be necessary to introduce new legislation (along the lines of the 1990 Human Fertilisation and Embryology Act), or at least to set up an independent regulatory body to regulate it.
Comment: Kaye and Martin deplore the limited public debate that has so far taken place on the proposed UK database. However, they acknowledge that it is an early priority for the Human Genetics Commission (which is launching a public consultation on the topic in Newcastle on 27 November), and that the Wellcome Trust and the Medical Research Council are also undertaking public consultation. Indeed, in their recent report on progress with the project, the Wellcome Trust and the MRC have indicated that the current plan is for there to be a regulatory committee, "independent of both the users of the information and the scientists involved in developing it", to safeguard the interests of the volunteers and the public as a whole. Perhaps all that is needed is to go one step further by setting this body up as an official regulatory committee responsible to the Government.
