Potential of genome medicine could be lost warn scientists
The NHS needs a new body for evaluating diagnostic tests if it is to make the most of advances in genomic medicine, says a report.
The PHG Foundation and the Centre for Science and Policy at the University of Cambridge say that the potential of genetic testing to deliver better treatments at lower cost will be delayed unless there is a system to establish the benefits.
The absence of such a system means that hospitals and GPs may waste money on new tests that do not have clear benefits for patients, while ignoring others that can lead to better clinical outcomes. Just as the National Institute for Health and Clinical Excellence (NICE) currently recommends which treatments are cost-effective for NHS use, new genetic diagnostic techniques must be examined in a methodical way.
“The Department of Health should establish an evaluation and decision-making body, as a matter of urgency, to direct research funding towards important strategic questions and ensure evidence-based implementation of both new diagnostic techniques and informatics systems within the NHS,” the report says.
The recommendation comes in response to a House of Lords inquiry into genomic medicine published last summer, which found that the NHS was not ready to take advantage of genetic advances in healthcare.
The falling costs of reading DNA mean that it is likely to be possible to sequence any person’s entire genome for less than £1,000 within a year or two.
Scientists have also started to identify how variations in DNA affect responses to drugs or susceptibility to disease, raising the prospect of personalised medicine based on individuals’ genetic profiles.
Doctors could potentially use genetic information to select the best drugs for treating particular patients, or to calibrate doses of medicines with potentially dangerous side-effects, such as the blood-thinning drug warfarin. Companies such as 23andMe and Pathway Genomics are already selling genetic tests directly to consumers that provide some of this information.
Little research, however, has so far shown that knowing details of a patient’s genome is helpful to doctors, and leads to better medical outcomes when it is used in prescribing drugs.
The new report, which was compiled following four seminars attended by more than 50 doctors, scientists, ethicists and patient representatives, says that this needs to be addressed as new genetic tests are offered to the NHS.
NICE recently established a diagnostics assessment programme to start this, and is currently conducting a pilot project, but a more comprehensive system is needed. New commissioning structures are also required to ensure that validated tests are accessible everywhere.
Caroline Wright, head of science at the PHG Foundation, said: “The heart of the problem is that we do not have enough data on whether these tests actually help patient care. We desperately need the equivalent of clinical trials for diagnostics.
“There’s an implicit assumption that testing is good, that knowledge is power, but the key question is does a test result helpfully change the management of a patient? If not, it is a waste of money.
“When public money is being spent, it must be spent sensibly to get better care outcomes. It’s really important that anything funded by health systems has evidence behind it.”
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