Gene tests ‘threaten core NHS principle’

Genetic testing can be really helpful. Some diseases are single gene dominant, such as Huntington’s Disease, and discovery at birth and from screening populations, could reduce this to new mutations only. The Human Gene Project has opened up multiple genetic diseases, some with many genes. The potential for increasing the health of populations is there, but a long way off. Meanwhile, the research is likely to benefit volunteer families, mainly those living near centres of excellence. So we need to be very careful that the development of the governments suggested scheme is regressive for as shorter time as possible. We should not ignore the potential to find the truth, but we need to acknowledge the risks. In addition, will all 4 jurisdictions do the same?

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Chris Smyth 29th Jan 2019: Gene tests ‘threaten core NHS principle’

Selling genetic tests to healthy people breaches a core principle of the NHS, creates a two-tier health service and risks forcing the sick to go without treatment, doctors warn.

World-leading NHS genetic services for people with cancer and rare diseases will be overwhelmed by the worried well and give unfair protection to those who can afford them, they say.

The plans, revealed by The Times, would let healthy people pay to have their genetic code sequenced and receive a personal health report based on the results.

Unlike commercial tests, which look at a limited sample of genes, the NHS plans to read every letter of a person’s DNA. Ministers hope that offering the most detailed prediction of the risks of conditions such as cancer and dementia will tempt people to volunteer their genetic data for research.

Yesterday MPs on the health select committee warned Matt Hancock, the health secretary, that the scheme could swamp GPs with queries from the worried well and lead to inequality. Mr Hancock rejected this, saying that if done carefully the plan could save lives and prevent illness by reducing demand on the NHS. “Healthy people who have their genome sequenced can find problems that they didn’t know existed. That allows for them to change behaviour, have preventative treatment or take other actions that can reduce the long-term pressure,” he said.

However, in a letter to The Times, experts including Andrew Goddard, president of the Royal College of Physicians, Jo Martin, president of the Royal College of Pathologists and Helen Firth, chairwoman of the Joint Committee on Genomics in Medicine, write: “Selling whole genome sequencing to healthy people breaches a core principle of the NHS. It will create two-tier access to services, where people who can pay are able to access services that are denied to those who cannot.”

People deemed at high risk of some conditions may be offered extra NHS screening, a protection not available to people who cannot afford the test.

There are concerns that genetic testing breaches NHS guidance on mass checks. It is also feared that unreliable information could lead to patients having needless drugs or surgery and cause psychological damage to people told they are at risk of conditions for which there is no treatment.

Other experts are cautious about the plans. James Pickett, head of research at the Alzheimer’s Society, said that DNA tests could revolutionise dementia treatment but had not reached that stage. “Everyone has a right to know about their risk if they want to, but whoever provides the test must ensure people understand the meaning and consequences of the results,” he said.

Concerns over sale of gene tests on NHS l

Sir, You report (“Gene test for sale on NHS”, Jan 26) that the NHS intends to sell whole genome sequencing to healthy adults who will receive a “personalised” test report. The UK leads the world in collaborative genomic research and in the provision of a high-quality genomics clinical service. Genomics has already transformed the lives of many and promises much more in the future.

Selling whole genome sequencing to healthy people breaches a core principle of the NHS. It will create two-tier access to services, where people who can pay are able to access services that are denied to those who cannot. Furthermore, without additional resourcing the extra demand that it will create on laboratory and clinical capacity may compromise the provision of diagnostic genome sequencing and clinical care for NHS patients for whom there is already proven benefit, such as those with rare diseases and cancer.
Helen Firth, Chairwoman, Joint Committee on Genomics in Medicine; Andrew Goddard, President, Royal College of Physicians; Jo Martin, President, Royal College of Pathologists; Bob Steele, Chairman, UK National Screening Committee; Dian Donnai, Emerita Professor of Medical Genetics, University of Manchester; William Newman, Professor of Translational Genomic Medicine, University of Manchester; Paul Pharoah, Professor of Cancer Epidemiology, University of Cambridge; Jane Hurst, President, Clinical Genetics Society; Anna Middleton, Chairwoman, Association of Genetic Nurses and Counsellors; Andrew Wilkie, Nuffield Professor of Pathology, University of Oxford; Eamonn Sheridan, Professor of Clinical Genetics, University of Leeds

Sir, The reported intention by ministers to allow the NHS to charge healthy people to map their genetic code will create a new and potentially damaging level of intimacy alongside a false sense of certainty. Although we all have experience of the dynamics of an intimate one-to-one relationship with another human being, we begin to feel very uneasy when Mark Zuckerberg tells us that privacy is an outdated social norm in his justification of the Facebook brand. And for some, when things all go wrong, they are tormented by their intimate thoughts to the point of mental breakdown.

This latest move means that otherwise healthy people will be given access to their whole personal genome from deep within their being, and supplied with a prediction of the risk of some very disabling condition: for example, you might be told that you have a 74 per cent chance of developing Alzheimer’s disease by the age of 56. Because of the power of numbers this may appear to present a certainty but it is a false one. Without professional post-test counselling and a full understanding of risk this new intimacy could be extremely destructive. We do not want the necessity of a new psychiatric diagnosis of “post-traumatic genome test disorder”.
Morton Warner
Emeritus professor of health strategy and policy, Welsh Institute of Health and Social Care

Sir, Although dementia research could benefit from the large and potentially diverse pool of data that population DNA testing would provide, we do have concerns. Genetic testing is not recommended for people who are not already suspected to be at high risk. Little is known about the impact of informing healthy people about their genetic risk of dementia, a disease that is much feared. Anyone taking such a test would need the results explained to them sensitively and with the uncertainties around the result clearly explained to them. Provision for such expert advice would need to accompany the national rollout of whole genome sequencing.
Dr James Pickett
Head of research, Alzheimer’s Society

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Robert Plomin interview – why genetic testing is the future David Aaranovitch 29th September

Gene test for sale on NHS – Healthy patients to learn risk of killer diseases – Chris Smyth in the Times 26th Jan 2019

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At last – common sense on the right to die with agreement of Dr and Family. The cost implications of prevention of genetic diseases are a barrier too high for most countries..

Societal debate on CRISPR should occur: but it won’t…… Of course there is a cost too, but that’s another matter. Lets just see if we can agree that CRISPR is desirable.

You have been warned…. No genetic secrets will remain ….



This entry was posted in A Personal View, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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