The Human Genetics Commission has published the minutes of its open plenary meeting held in Cambridge during June and of the most recent meeting of its Business Committee. Currently, the HGC's major preoccupation is with developing its report on the storage, protection and use of personal genetic information, due for publication towards the end of the year. Discussion at the meeting reflected the difficulty in reaching consensus on the definition of genetic information, and whether it merits special protection. Drafting teams are working on sections of the report dealing with the use of genetic information in medical practice, in medical research, in insurance and employment, and in the forensic context. In the area of insurance, the Commission has already recommended a three-year moratorium on the use of genetic test results by insurers and has produced comments to inform the Government's response to the report of the House of Commons Select Committee on Science and Technology. The HGC also considers it important to investigate insurers' use of family history information and intends to ask the Association of British Insurers and the Association of Medical Underwriters for information on this subject; a full investigation on this issue would move beyond the remit of the current report and would need additional resources. In the forensic area, the HGC feels strongly that there is a need for an independent body to be set up to oversee access to the samples in the national forensic DNA database, particularly in light of recent legislation which allows retention of DNA samples from a suspect who is subsequently acquitted, and allows samples given voluntarily in the course of an investigation to be used subsequently for different investigations. The HGC's stance on several of these issues is set out briefly in its comments to inform the Government response to the House of Lords report on genetic databases. The comments suggest that the HGC may take a more cautious line than the Lords, who decided that the provisions of the current Data Protection Act were sufficient to cover genetic information; the HGC draws the Government's attention to concerns raised by the Information Commissioner "about how the DPA may fail to protect against inappropriate disclosure from a genetic database", and says it is still considering its advice on this issue.
At its June meeting, the Commission also discussed the development of plans to set up a consultative panel of people affected by genetic disorders, either as patients, as family members or as carers. It decided that the panel should have at least 100 members, who would communicate mainly via the internet but would meet in person perhaps once a year. It was felt that it was important to achieve a wide and balanced membership for the panel that did not just reflect the views of a small number of lobby groups. Panel members will need to have a clear understanding of how their recommendations will be used by the HGC.
Earlier this month, the HGC announced that it had appointed a new member: Sir John Sulston, former head of the Sanger Centre, the home of the UK part of the Human Genome Project. Sir John replaces Professor John Durant, who resigned during 2000. The Commission will also now need to replace Professor Bruce Ponder, who resigned recently due to the pressure of other commitments