In the news

The Human Genetics Commission has published the minutes of several recent meetings, including its plenary (open) meeting during February, and meetings of several of its subgroups. There has been a continuing flurry of work on the Commission’s report on personal genetic information (PGI), both by the full Commission and the PGI subgroup, but the scale of the task of putting the final report together has led to some delay in its completion, and publication is now scheduled for April. If proposals for the BioBank UK project go ahead, the HGC plans to hold a public forum and information-gathering day on human genetic databases, probably in May.

At its December meeting, the Genetic Services subgroup (formerly the Genetic Testing subgroup but now renamed and with a wider remit) discussed a genetic testing service that is being offered directly to the public (see item in May 2001 newsletter). It decided that this service, which offers testing for polymorphisms supposedly associated with susceptibility to common diseases, did not comply with the Code of Practice on "over the counter" tests formulated a few years ago by the Advisory Committee on Genetic Testing (ACGT). The subgroup felt that the Code of Practice, originally formulated mainly with carrier testing for recessive genetic diseases in mind, needs revision in the light of the changing emphasis of genetic testing and the expected introduction of pharmacogenetic testing. The Genetic Services subgroup also discussed the somewhat vexed question of the publication of guidance on prenatal genetic diagnosis produced by its predecessor group, the ACGT. Although guidance was felt to be needed to improve current practice, the view of the HGC is that the ACGT document does not deal adequately with some of the wider ethical issues surrounding prenatal diagnosis. The Subgroup decided to recommend that the ACGT’s guidance should be sent to the antenatal subgroup of the National Screening Committee, together with an additional section discussing the ethical and social context. During 2002, the Genetic Services subgroup will help to steer and scope work on genetic screening and reproductive issues, which will be a major focus for the HGC.

The Public Involvement subgroup has made progress with the setting up of a consultative panel of people affected by genetic disorders. The panel has 106 members who are affected, either personally or as a carer or family member, by a single-gene disorder, a multifactorial disorder with a substantial genetic component, or a chromosomal disorder. The panel’s views will be sought on a range of issues under consideration by the HGC. HGC members will receive a digest or summary of these views, which will be non-attributable. The strategy needs to dovetail with work being done by other bodies such as the Wellcome Trust and to be feasible within a fairly modest budget. One idea is that the HGC website might feature short factsheets giving the arguments for and against issues raised, for example, by media stories. There are many advantages to using electronic communication in seeking the views of the public, but the subgroup also noted that it is important not to leave out groups that do not have access to this technology.