In the news

The House of Lords Select Committee on Science and Technology has now published its full report on human genetic databases (the evidence gathered in the course of the Committee's inquiry was published last last year - see item in November 2000 newsletter). The report gives enthusiastic endorsement to proposals to establish a database of genetic information linked to medical records, to aid research aimed at discovering common DNA variants associated with susceptibility to various diseases, and investigating how these variants interact with environmental factors. The Committee recommends that the Government set up a Medical Data Panel, including both professional and lay members, which would approve and oversee projects involving the use of human genetic and medical information. The Panel would be charged with ensuring that such projects complied with the provisions of the 1998 Data Protection Act, which would remain the main instrument protecting the use of personal data. The report urges the Government to make an urgent investment into building up an integrated system of GP databases within the NHS, to enable patient data to be made available for research in a standardised and usable form. It also recommends an immediate injection of funds, both by Government research councils and the research charities, into developing expertise in bioinformatics and statistics. The Committee considers it vital that individuals participating in projects involving the use of their personal medical and genetic data should give informed consent, and it sets out the elements that a consent form should contain. These elements include an acknowledgement that it is impossible to foresee all possible future uses of medical information, and a willingness to entrust the oversight of current and future uses of this information to the Medical Data Panel. Finally, the Committee urges the Government to take action to ensure that patents on gene sequences are not granted unless a significant function for the gene has been demonstrated, and that an optimal balance is maintained between protecting commercial interests and fostering research.