Mark Henderson, Science Editor
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The health service is not ready for an impending genetic revolution in medicine and requires urgent reform to turn scientific advances into better patient care, a parliamentary inquiry declares today.
The NHS needs to revamp its provisions for genetic testing, the training of doctors and nurses, and its IT and laboratory services, if understanding of the human genome is to deliver health benefits to its patients, according to a House of Lords report.
Medical advances stemming from the sequencing of the human genetic code are already starting to improve healthcare, and could transform it over the next decade, the influential Lords Science and Technology Committee said. Widespread genetic testing could aid the diagnosis and prevention of disease, and allow doctors to prescribe targeted drugs according to patients’ individual genetic profiles.
This opportunity, however, could easily be missed without significant changes to NHS infrastructure, training and practice, the committee found. It called on ministers to prepare a new White Paper on genomic medicine, to address the challenges ahead. “The use of many types of genomic tests is increasing rapidly, both in the NHS and in tests sold directly to consumers, and the availability of these tests will, in time, have a dramatic impact on disease diagnosis and management,” the report said. “This is already placing strain on the expertise of doctors, nurses and healthcare scientists, who at present are poorly equipped to use genomic tests effectively and to interpret them accurately, indicating the urgent need for much wider education of healthcare professionals and the public in ‘genomic medicine’.
“If our recommendations are taken forward, we believe that the UK will benefit in terms both of wealth generation and of improved health.”
The committee called for tighter regulation of genetic tests sold directly to the public over the internet, which assess customers’ risk of developing conditions such as diabetes and heart disease for a fee of between £300 and £600. Such services, offered by companies such as 23andMe and deCODEme, should be independently assessed so that the information they provide is scientifically validated, and genetic counselling should be available before and after the test.
The committee also urged the Government to keep a close eye on the social and ethical implications of more widespread genetic testing. It said there was not yet a case for legislation to ban genetic discrimination by employers, because few tests can yet predict health well enough to make them useful in this way, but that this needs to be monitored in the future.
The report endorsed a moratorium on the use of genetic tests by insurance companies that runs until 2014. It said, however, that this measure needed to be tightened, to make it clear that people who have genetic tests before 2014 will not be obliged to reveal the results to insurers when the moratorium expires.
The Lords inquiry, which has been eagerly awaited by scientists and doctors, was launched because of the exceptional pace at which science has advanced since the last government White Paper on genetics was published in 2003.
In the past few years, the costs of reading DNA have fallen so sharply that many scientists predict it will be possible to sequence any individual’s entire genetic code for less than £1,000 within a year or two. Research has also revealed hundreds of genetic variations that affect people’s risk of disease, or their response to medicines. The committee, chaired by Lord Patel, said that while it would be several years before this information allows the accurate prediction of disease, several medical applications are already practical or not far away. Doctors could use genetic information to separate diseases such as type 2 diabetes into different subtypes that require different therapies, or to calibrate doses of drugs such as the blood-thinner warfarin. Another benefit could be to identify people with a high genetic risk of breast or prostate cancer, who could have earlier screening. The NHS, however, is not ready to start offering such services, the report found.
Lord Warner, a former health minister who sat on the panel, said: “The people who have been working in this area, they are ready, though sometimes they are frustrated about access to kit. But the great mass of people working in the NHS outside genomic medicine are probably for the most part only dimly aware that this is going on.” Doctors who are not specialists in genetics receive little training in the subject, and this focuses on rare diseases caused by single mutations instead of the DNA variations that affect common conditions such as diabetes or cancer. The use of genomic tools to diagnose and prescribe should be taught to all medical undergraduates, and as a core competency for junior doctors, the report said. GPs should additionally learn how to advise patients about the risks revealed by their genetic profiles.
New commissioning guidelines are needed, to govern when genetic tests are ordered and how they are funded, and postcode inconsistencies in what is available must be ironed out. Some primary care trusts, for example, do not order DNA testing of close relatives when a person suffers sudden cardiac death. As this can have a genetic origin, identifying carriers early can help to prevent further deaths.
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