Government managed DNA testing is not risk free for individuals.

Do I really trust the government with my genetic information?

The answer is yes when I am over 65, and if the information obtained might help my children or grandchildren. Will I be thinking of the population as a whole? No. Will I be reluctant if I might carry a psychiatric gene? Yes. This might prejudice the employment prospects for my descendants if leaked… and it will leak. The ethics and the perverse incentives and perverse outcomes of a genetic data base need frank and full and open discussion before we go down the route proposed by the Chief Medical Officer. What could be the effect on your Private Medical Insurance premium, or your children’s life insurance premium? Whilst the health service argues about exclusions and co-payments it will fail to discuss these options openly, and it will be the same with a genetic database. NHSreality appreciates that governments are concerned with populations, and not individuals, but they will need to prove this concern in not distorted, and model any system in advance for genetic testing. The possible exclusion of paracetamol is cheap and risk free for each one of us. DNA testing is not… But it is good news that the option is coming..

Michelle Roberts for BBC news reports today: Chief medical officer calls for gene testing revolution

In the Times Chris Smyth reports: Give every cancer patient a DNA test, says health chief Dame Sally Davies

 

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Every cancer patient must have genetic testing on the NHS to bring an end to “one-size-fits-all” treatment, the chief medical officer has ruled.
Professor Dame Sally Davies demanded that DNA testing become a routine part of treatment within five years to allow for individually tailored care. Two thirds of cancer patients could receive more effective drugs or be spared side-effects by the testing, she predicted, adding that those with rarer diseases could be diagnosed faster.
The NHS must make a centralised DNA testing service to ensure patients have results within weeks and end the “cottage industry” where different hospitals use data differently, she said.
The potential of such medicine has excited doctors since the human genome was sequenced two decades ago. The NHS began a test programme three years ago, with tens of thousands of patients in 11 hospitals given routine DNA testing to determine treatment.
In her annual report, published today, Dame Sally said it was time for this to become the standard across the country, demanding that the NHS make Britain the first country to test the DNA of every patient with certain diseases. “I want it to be considered part of normal care, indeed an expected part of care,” Dame Sally said. She said that data from the test showed that 60 per cent of cancer patients have “actionable genes which either said ‘don’t treat with standard treatment that would be unsafe’ or ‘try that’, so we know that for two thirds it can impact on personalising treatment. That is going to go up.”

About three million people in Britain have one of 7,000 rare diseases and at present it takes an average of five doctors, four years and three misdiagnoses before they find out what is wrong. Genetic testing can give an immediate answer and Dame Sally said this should be routine within a couple of years.

Routine testing would also start quickly in patients with some types of cancer before being expanded, she said. “My dream is that in the end every patient has their genome done if they’ve got cancer,” Dame Sally said.

Jeremy Hunt, the health secretary, has backed Dame Sally’s vision.

Tests have already established the principle that cancer can be treated according to its genetic signature rather than where in the body a tumour is.

Professor Sir John Savill, chief executive of the Medical Research Council, said the plans were “a landmark report of great national importance”.

Analysis
The names for tumours — breast cancer, skin cancer and the like could soon be seen as relics of the pre-genomic era. It is increasingly apparent the genetic make-up of the patient and their tumour are often more important than where it is found.

Personalised genetic treatment has been hyped for two decades but we may be on the cusp of making it a reality. One key reason is that the cost of sequencing has fallen from billions in the 1990s to £700 today. The main barrier may be attitudes. Will people be happy with a database of their genetics? Insurance companies will not be allowed to see it but researchers may.

Professor Dame Sally Davies is blunt: if you don’t allow genetic data to be gathered, your treatment will be worse as doctors will not understand the best way to treat you. After the debacle of the attempt to centralise GP records to boost research, she is banking on self-interest being more effective than altruism.

 

Image result for gene testing cartoon

 

Image result for gene testing cartoon

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This entry was posted in A Personal View, Good News, Perverse Incentives, Political Representatives and activists, Rationing, 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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