In a
debate on the
House of Lords Select Committee on Science and Technology Report on Genetic Databases, peers commented on some aspects of the Government's response to the report's recommendations (the Government response is not available on line but can be
ordered from The Stationery Office). The Committee's report was very supportive of the aims of research designed to unravel the contribution of genetic factors to common disease and recommended a number of measures to strengthen the UK's capacity for such research, in particular in the area of bioinformatics, computer science and statistical genetics. This was acknowledged as a priority in the Government's response. The Select Committee also drew attention to inadequacies and inconsistencies in the implementation of information technology in the NHS, in particular in the development of electronic patient records. In its response, the Government listed 14 different organisations and initiatives in this area, but peers were concerned that the approach was heavily bureaucratic and probably too slow for systems to be in place in time for the launch of the proposed
BioBank UK project, and that the Government had not adequately addressed the need for standardised data and mandatory NHS numbers in all health records. However, the widest divergence between the Select Committee's recommendations and the Government response concerned the Committee's view that a Medical Data Panel should be established to set policy and approve projects involving the secondary use of NHS and medical research data. The Government responded that the proposed roles of the Medical Data Panel were covered already by the system of Research Ethics Committees and the new
Patient Information Advisory Group set up in 2001 under Section 60 of the
Health and Social Care Act. In the debate, some peers expressed concern that the operation of the PIAG, seemed unnecessarily cumbersome and inefficient and would hamper research, while research ethics committees were already overburdened and sometimes showed an inconsistency in approach. In his reply on behalf of the Government, Lord Hunt mentioned that the Government is considering proposals for a system of broad class approval by the PIAG for types of primary research projects in which "the likelihood of detriment to patients is small, the infringement of privacy is minimal and necessary and appropriate safeguards are in place" (see
news item on Section 60 consultation).