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Genetic testing ‘will save NHS time & money’ - Hancock

Increasing numbers of worried patients will visit GPs to discuss borderline results, warns RCGP

Louise Prime

Thursday, 21 March 2019

Genetic testing will save the NHS time and money in the long-term by encouraging people to work with clinicians in taking better care of themselves, Matt Hancock has claimed, although they will need help and support to make sense of their genetic data. The Royal College of GPs (RCGP) agreed with the health and social care secretary that the information will need to be handled sensitively and ethically, and it warned that an increase in testing of "unimportant or dubious value" will lead to confusion and distress, and to an increasing number of people visiting their GP worried about their results.

Matt Hancock yesterday helped celebrate the “world-leading achievement” of 100,000 whole genomes having been sequenced to help diagnose and treat rare diseases. He explained that only last week, he found out the results of his own predictive polygenic risk tests – he is in the 3% of the population with the lowest genetic risk for heart disease, but in the worst 20% for prostate cancer. He commented: “Death from prostate cancer is more treatable if diagnosed early [but] so many men don’t find out until it’s too late… I’ve already booked a blood test, and obviously I’ll be on alert as I get older.”


He said the experience had taught him that it really matters how results are presented. He said: “You need an expert to help you make sense of the data, and you need a clinician to tell you what it means medically… your genes are only one part, and usually not even the biggest part, of the risk.”

He called for clarity of the respective roles, science and ethics of predictive polygenic tests, versus diagnostic whole genome sequencing: while predictive testing has big implications for screening, genomics can make cancer screening more targeted and more effective. He commented: “I see it [predictive testing] as a game-changer for cancer screening in the NHS, and I’m determined that we harness this technology to save lives.” He described whole genome sequencing as “revolutionary” and “life-changing” for rare diseases, because it is a diagnostic test of absolute certainty; and early diagnosis can have a massive, immediate impact on improving someone’s chances.

However, he warned that testing raises other questions, particularly around inherited diseases; ethics, privacy and consent; and operational issues. He welcomed the new NHS Genomic Medicine Service but noted that there is still more to do. He asked: “How do we train up doctors and nurses so they understand genetic data, including these new predictive tests, and are able to explain it in a way that helps people make the best decisions?… thousands of people are already taking predictive tests, and many are now turning up at their GP surgery with their results in hand…

“Some people say we shouldn’t encourage the ‘worried well’. I feel that’s the wrong response. We need to understand that people will have genuine concerns and we must give them the help and support they need to make sense of their genetic data.”

He argued that encouraging people to take better care of themselves will allow patients and clinicians jointly to prevent problems from arising, which will save NHS time and money in the long-term. He said: “Of course, that also means supporting our GPs and frontline clinical staff. We must get the right numbers in place – we now have record numbers of GPs in training, and we’re putting in the biggest rise in primary and community care in a generation.”

He added: “We already provide support and counselling to people, but we must ensure that provision keeps pace with the expansion of predictive testing.”

The RCGP agreed that genomic research will be increasingly important in shaping patient care and called for proper evaluation of advances in medical research to ensure that they benefit patients. It also insisted that genomic data must be used responsibly, ethically, and in a way that does not increase pressure on the NHS without the appropriate mitigating measures in place to cope with it.

College chair professor Helen Stokes-Lampard warned: “Many things that will be picked up by genetic testing will be unimportant or of dubious value, and these could leave people unnecessarily confused and distressed. This will undoubtedly lead to an increased number of worried people wanting to visit their GP to discuss their borderline results, at a time when general practice is already struggling to cope with intense demand – and millions of patients are already waiting too long for an appointment.”

She added that to support patients appropriately, GPs will need training and access to high-quality, up-to-date resources to learn about the implications of various results. She said: “In the case of a patient finding out they are at increased risk of developing a serious or life-changing illness, such as cancer, it is vital that appropriate specialist support is available to them to help them understand the implications of the results. Genetic testing should never be taken lightly – we are talking about sensitive patient data, with potentially serious medical and ethical implications for the patient and all their genetic relatives. People really need to consider these implications carefully before they decide to take a genetic test.”

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