NHS to sell patients genetic tests showing risk of killer diseases such as cancer and dementia

Sequencing will cost a few hundred pounds and patients will have to agree to DNA data being retained for research

Colin Drury
Saturday 26 January 2019 14:00 GMT
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Genetic tests which show the risk of a person developing illnesses such as cancer or dementia are to be sold to patients by the NHS.

The test is already given free to the seriously ill but, under new plans, it will be available to others at an esitmated cost of a few hundred pounds.

Those who take up the option will receive a full report detailing their likelihood of one day suffering from serious illnesses, including a range of cancers and Alzheimer’s disease.

But they would have to agree for their anonymised genetic data to be retained by the NHS for research, raising potential privacy concerns.

The proposals, announced by health secretary Matt Hancock on Friday, come less than two months after NHS researchers said they had reached their goal of sequencing 100,000 whole genomes of patients suffering from cancers and rare diseases.

The data from those genomes is being stored as part of a project to benefit both those patients themselves and scientists researching how such illnesses develop.

By offering healthy people the chance to also be sequenced, it is hoped the database can be hugely increased to hold the complete genomes of 5 million people.

Mr Hancock said: “Genomics has the potential to transform healthcare and ... I’m determined to do all I can to harness this life-saving technology.

“From this year, seriously ill children and adults with genetic conditions, including cancer, will be offered DNA analysis as part of their routine care.

“And, while healthy people should not have this service free on the NHS, there are huge benefits to sequencing as many genomes as we can – every genome sequenced moves us a step closer to unlocking life-saving treatments.

“So, alongside this, we’re introducing Genomic Volunteering, offering people the chance to pay to have their DNA mapped in return for voluntarily donating their anonymised data to help researchers develop treatments that will benefit everyone in the future.”

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However, there have been concerns about the plans, with Anneke Lucassen, chairwoman of the British Society for Genetic Medicine, telling The Times there was a “misunderstanding about what whole genome sequencing can deliver”.

She said: “There is a view that it will give you clear clinical predictions. And most of the time it will not.”

It also remained unclear how patients who have the tests will be dealt with should they find out they stand a high chance of developing a serious illness.

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