In the news

Three subgroups of the Human Genetics Commission, considering genetic testing, public involvement in genetics and the storage, protection and use of genetic information, have published notes of their recent meetings on the HGC website. The Genetic Testing Subgroup discussed, among other issues, the draft report on Prenatal Genetic Testing, published earlier this year by the Advisory Committee on Genetic Testing. Although it was agreed to be important that the final version of the report should be published as soon as possible, to tie in with the forthcoming report of the NHS Working Group on Laboratory Services for Genetics and with the NHS guidance on commissioning specalised services, it was felt that the report as it stands does not reflect the fact that the HGC's remit is wider than that of the ACGT's, particularly in the area of the social and ethical implications of genetic testing. Changes were discussed that would express more clearly some of the disadvantages of prenatal genetic testing (including from the perspective of the child), add information on living with a disability, and stress that support must also be available to those who decline prenatal testing. A revised foreword to the report will explain that its remit is to improve practice in the commissioning of services for prenatal genetic testing, and that there is a need for further consideration of the social and ethical issues.

A joint meeting between the Subgroup on Public Involvement and the Working Group on the Storage, Protection and Use of Genetic Information discussed a plan to use the People's Panel to gauge public attitudes on the storage and use of genetic information and samples. This will involve 1000 face-to-face interviews, conducted by MORI, with the questions (the exact wording of which is very important) to be developed by a steering group from the HGC. The questions will cover "insurance, employment, genealogical and forensic uses of genetic information and the development of genetic databases and issues of consent, confidentiality and access to information". It is hoped to have the results from this initial sampling available in time to inform a wider consultation process during November 2000 to February 2001. Ideas for how to conduct this consultation were discussed by the Subgroup on Public Involvement, with an emphasis on the need for the HGC to find effective and possibly innovative ways of "taking the consultation to the people". These may include roadshows and use of the HGC website. The consultation process will be launched with a one-day public meeting in Newcastle on 27 November, which will include a tour of the city's Centre for Life together with a large group of local A-level and FE college students, and an evening open meeting that might perhaps be filmed.

The Working Group on Storage, Protection and Use of Genetic Information is drafting a consultation paper on this topic, for presentation to the full HGC meeting in September. Various difficult areas from this paper were discussed at the Group's meeting, including the definition of "genetic information" - does it include family history information, for example, or phenotypic characterstics resulting from a particular genotype? The Group felt that consent for a DNA test should be both "specific and informed" but decided that the issues were very different in relation to diagnostic testing compared with predictive/presymptomatic testing, and that additional questions also arise when considering samples that might be used in current or future research. In the area of confidentiality, the Group discussed the tension between the "right not to know" genetic information, and the problem that exercising this right could deprive other family members of information they may wish to have. The consultation paper will present both sides of the issue. The Group welcomed the prospect of working closely with the House of Lords Inquiry into Genetic Databases.