Monthly update
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11 May 2008Researchers from St George's Hospital, London, have announced that they have identified seven different subtypes of chronic fatigue syndrome (CFS), also known as Myalgic Encephalopathy (ME) and post-viral fatigue syndrome.
9 May 2008The US Genetic Information Nondiscrimination Act (GINA) has finally obtained congressional approval after several previous attempts failed on their way through the Senate and House of Representatives (see previous news). The United States Congress is the bicameral legislature of the federal government of the US, consisting of two houses, the Senate and the House of Representatives, to whom senators and representatives are directly elected. The legislation was unanimously (95 votes to 0) approved by the Senate on 24 April 2008 and passed in the House of Representatives on 1 May 2008, by a vote of 414 to 1 (sole dissenter being Congressman Ron Paul). It is anticipated that President Bush, who has expressed public support for the legislation, will sign the bill soon.
7 May 2008An EU funded project to design a tool for diagnosis and monitoring of coeliac disease is underway (see news source). The collaborative project named CD-MEDICS ('Coeliac disease management monitoring diagnosis using biosensors and integrated chip systems') will be an interdisciplinary venture aimed at developing a lab-on-chip device which can be used at the point-of-care to screen blood samples for genes which make people more susceptible to developing coeliac disease as well as auto-antibodies which can indicate disease status.
7 May 2008A working group of the European Society of Human Genetics (ESHG) has brought out new recommendations on the patenting and licensing of genetic tests [Aymé et al. (2008) Eur. J. Hum. Genet. 16: S3-S9]. The recommendations are accompanied by a background paper covering the associated ethical, legal and social issues [Soini et al. (2008) Eur. J. Hum. Genet. 16: S10-S50].
29 April 2008In the last month there have been several new moves form the US intended to accelerate the pace of change in pharmacogenomics, the study of genetic influences on drug responses. The National Institutes of Health (NIH) has sought input from scientists, the pharmaceutical sector and other on challenges and barriers to pharmacogenomics research, on behalf of the Trans-NIH Pharmacogenomics Working Group, with a view “to highlight opportunities, reveal gaps, and aid in identifying specific, achievable goals that will advance the field” (see Request for Information).
28 April 2008Initial results from two gene therapy trials to treat a rare congenital eye disorder are extremely encouraging, producing a significant improvement in retinal function, particularly in one of the six patients (reported by BBC News).
28 April 2008Our inheritance, our future, the 2003 White Paper on genetics, set out the UK Government’s first explicit policy commitments in the field of human genetics. Significant investment was announced in a range of areas including clinical genetic testing, pharmacogenetics research, service development, and education and training of health professionals. The Genetics Knowledge Parks programme aimed to look ahead to the scientific and policy developments that would be needed to bring genetics advances into mainstream health care and public health.
25 April 2008Amendments proposed last year in a review of the 1990 Human Fertilisation and Embryology Act contain a new provision in relation to fertility treatment that has offended members of the deaf community and raises important questions about government policies on embryo selection and serious disability. The controversy is centered on a new licensing condition proposed in clause 14(4) of the Human Fertilisation and Embryology Bill that would prohibit the selection of a ‘disabled’ embryo when a normal one is available. Embryos known to have a genetic abnormality (including a gender-related abnormality) that places them at ‘significant risk’ of ‘serious disability or illness’ are not to be preferred over those that are not known to have the abnormality. The same prohibition extends to the preference of persons with a genetic condition who might act as donors of gametes or embryos. The express intention of the clause, indicated in both the explanatory notes and proceedings in the House of Lords, was to prevent situations similar to those reported elsewhere in which deliberate attempts had been made to produce a deaf child through positive selection of embryos or donors.
23 April 2008New technologies that have a potential to impact on health services are in constant development, and adequate Health Technology Assessment (HTA) systems are needed in order to make evidence-based decisions on the benefits of new clinical tools. A recent report published by the European Observatory on Health Systems and Policies has identified areas which could lead to improvements in HTA systems; Ensuring value for money in health care: The role of health technology assessment in the European Union is based upon a review of HTA organisations and processes across Europe.
22 April 2008In 1995 the House of Commons Select Committee on Science and Technology published Human Genetics: the Science and its Consequences, a report which showed for the first that UK politicians were becoming aware of new developments in genetics and their potential impact on health care. Publication of the report was followed, during the second half of the 1990s, by the establishment of the first Government advisory committees devoted to aspects of genetics policy.