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House of Lords Genomic Medicine Report calls for NHS overhaul to improve future healthcare

9 July 2009
Appeared in BioNews 516

When giving evidence to the Lords' inquiry into genomic medicine, Health Minister Dawn Primarolo estimated that the vast potential benefits of genomic medicine will not largely be seen by patients for at least a decade. The House of Lords Science and Technology Committee respectfully but conclusively disagrees in its report on Genomic Medicine, published 7 July 2009. Lord Patel who chaired the inquiry surmised, 'Genomic medicine will clearly have a huge impact on health provision and the NHS in particular over the next few years.'' The 127-page report avers that genetic tests ' will, in time, have a dramatic impact on disease diagnosis and management' but found that currently 'several barriers’ prevent the benefits of genetic testing from becoming readily available through the NHS. The peers make a number of wide-ranging recommendations to the government policy involving the overhaul of the NHS infrastructure and training in order to ensure that new genetic technologies and knowledge are integrated into national healthcare.

Genetic testing could aid the diagnosis and prevention of disease, and could improve drug prescription selection and dosage accuracy based on a patient's genetic profile. A range of genetic tests are already being used within the NHS to improve the diagnosis and treatment of common illnesses, according to the Committee. However, evidence revealed 'significant inequalities' in available genetic services without a national policy, requiring 'significant changes' as 'vital' for 'equitable and cost effective' service. The Committee says that the Government should now produce a 'comprehensive' new white paper on genomic medicine that details how advances in this field will be funded and efficiently rolled-out within routine clinical care. Rapid advances in the field have dated the previous 2003 Genetics White Paper, done at the completion of the Human Genome Project, when application focused narrowly on rare diseases caused by single-mutations. Rapid advances in genomics now assist diagnosis and treatment of common conditions including diabetes and cancers caused by multiple genetic factors.

The Report found that healthcare professionals are currently ' poorly equipped to use genomic tests effectively and interpret them accurately' indicating an 'urgent need for much wider education of healthcare professionals and the public in 'genomic medicine''. It recommended that genomic tools to diagnose and prescribe should be taught to medical undergraduates and become a core competency for junior doctors. General practitioners, it states, should be trained in how to counsel patients about the risks revealed by their genetic profiles. Lord Warner, a former health minister and Committee participant, describes specialists as ready but 'frustrated' while 'the great mass of people working in the NHS outside genomic medicine are probably...dimly aware that this is going on.' Currently, UK physicians receive little genetic training and what is taught focuses on rare single-mutation diseases like Huntington's disease and cystic fibrosis. Medical genetics has been practised by specialist clinical geneticists working as 'gatekeepers' providing specialist genetic services in regional centres. While previously successful, the peers feel this model is rapidly becoming insufficient

The Committee also expressed concern regarding the burgeoning genetic direct to consumer tests (DCT) market. It suggests that genetic tests should be reclassified from 'low' to 'medium' risk within European law to require more stringent pre-market approval. Other recommendations included the creation of an online registry through the Department of Health that lists the companies with an independent evaluation of their services.

The report also highlighted genetic privacy concerns but suggested mild reforms and effectively states that the jury remains out on whether anti-genetic discrimination legislation will be required to prevent potential abuses by insurers and employers.

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