In the news

President Bush has issued an Executive Order to create the "President's Council on Bioethics", following the expiry of the charter of the National Bioethics Advisory Commission. The role of the Council, which will run for two years, will be to advise the President on issues in bioethics and to explore the "human and moral significance" of new developments in biomedical science and technology. The Council is not expected to reach a consensus view on every issue, but may present a range of views representing the diversity of opinion on the subject. Its 18 members will include, as well as scientists and clinicians, experts from the fields of law, philosophy, social sciences and theology. The first Executive Director of the Council will be Dean Clancy, a policy advisor to the US Congress. Administrative support for the Council will be provided by the Department of Health and Human Services. 

The Department of Health has published the first 23 of a set of 35 definitions of specialised services. The set includes medical genetics as a whole, in addition to separate definitions for two single-gene disorders: cystic fibrosis and haemophilia. The definitions were developed by national working groups coordinated by the London Regional Specialist Commissioning Group, and involved input from commissioners, clinicians, managers, finance and information staff. The Medical Genetic Services definition sets out the core components of a genetic service, which include accurate clinical and genetic laboratory diagnosis, risk estimation, genetic counselling and support for individuals and families, maintenance of confidential family records, and provision of education and training in genetics to other health professionals. Emphasis is placed on the importance of coordination with other services (for example specialised services for women's health, specialised services for children, specialised cancer services, and current and proposed national population screening programmes) in order to ensure good provision in areas such as prenatal and preimplantation genetic diagnosis, inherited metabolic disorders and familial cancers. The definition includes detailed descriptions of the activities of clinical and laboratory genetic services, information on national and Europe-wide quality and accreditation standards, and brief discussion of the development of standardised "contracting currencies" for genetic services by the Joint Committee on Medical Genetics. Section B of the report, which sets out views of the working group that are not necessarily endorsed by the Department of Health, points out some problems and inadequacies of genetic services as they are currently configured, including the issue of transfer of genetic tests from research to clinical service, the need for national guidance on the commissioning of preimplantation genetic diagnosis, and the current lack of clarity in commissioning arrangements for haemoglobin disorders. 

The UK government's emergency legislation to ban human reproductive cloning is expected to receive Royal Assent on 4 December, after being passed by the House of Lords on 26 November and the House of Commons on 29 November. The Human Reproductive Cloning Act 2001 prohibits "the placing in a woman of a human embryo which has been created otherwise than by fertilisation". Anyone contravening the law will be liable to a prison sentence of up to 10 years. 

The Human Fertilisation and Embryology Authority has announced that it has decided, in principle, to allow couples who are at risk of having a child with a serious genetic disease to use preimplantation genetic diagnosis (PGD) to select an embryo that is both free of the disease and has a tissue type that matches that of an existing affected child. This procedure, which has already been successfully carried out in a private clinic in the US (see article in July newsletter) would only be appropriate in cases where there is a good chance that the disease in the older child could be treated by a transplant of stem cells from the umbilical cord blood of the baby. The HFEA will license applications for the procedure on a case by case basis: approval will only be given if the genetic disease is severe or life-threatening and if all other possible sources of donor tissue for the affected child have been explored. The decision applies only to couples who would already be eligible for PGD to avoid the birth of a child affected by a severe genetic disease; couples with a child affected by leukemia, for example, would not be given approval to use PGD solely for selecting a tissue-matched embryo.