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New NHS gene database could help identify cancer risk and personalise treatment

A new NHS gene database of 120 cancer-linked genes will help patients in England and their families assess their cancer risk, the health service says.
People will be able to have their genetic information compared with the register, which NHS England has described as a world first.
Those identified as having an inherited risk will be offered routine check-ups and screening for certain cancers, including breast and prostate cancer.
Patients could also be tested to see whether they would respond better to particular treatments, allowing for personalised care.
Health secretary Wes Streeting said: “One in every two people will get cancer in their lifetime but that does not mean the chances are random – many people face a higher risk through the genes they inherit.
“And while we cannot do anything about inherited genes, we can do something about what we do with that information.”
Tens of thousands of cancer patients and those with a family history of the disease already undergo genetic testing on the NHS every year.
Those known to have a higher risk profile will be added to the new register.
They will be given tailored information about what they can do to lower their chance of developing cancer or detect it early.
The NHS said it was building the register as part of a 10-year plan to improve prevention and treatment of cancer.
Prof Peter Johnson, NHS England’s national cancer director, said it was “the first time any health care system has brought together all the information about all the genetic risk into a single place.
He said it pulled together the tests patients were already offered to check their cancer susceptibility into a single register, “so that we can contact people to offer them screening and in some cases preventative treatment.”
This will allow practitioners to “keep tabs on people” and offer them new tests and treatments as they are rolled out, he added, while stressing it would be “incredibly confidential and secure”.
Johnson said that while learning about risk could be “very daunting”, it meant the disease could be picked up as early as possible.
The NHS National Inherited Cancer Predisposition Register follows a similar database for Lynch syndrome, an inherited condition that increases the risk of several cancers.
That initiative saw more than 12,000 people offered routine preventative screening after being identified as higher risk.
Claire Rowney, chief executive of breast cancer Now, said the move would “transform the lives of women who are at increased risk of breast cancer due to their family history or genetics.”
She said it must be accessible to all clinicians and designed so those at increased risk receive “joined-up care.
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Report makes the case for an incentive change in health data

In a new report, “The Case for Incentive Change in Healthcare Data,” WHIS Lead Producer Poppy Howard-Wall explores why healthcare’s biggest data challenge may not be technical but economic.
Integrating learnings from Poppy’s conversations with senior leaders at the ViVE Summit, the report highlights how fragmented data and misaligned incentives continue to limit the industry’s ability to deliver truly longitudinal care.
Howard-Wall writes: “For the women’s health industry, where many conditions have historically been under-researched and longitudinal datasets remain incomplete, the consequences of fragmented data infrastructure are even more pronounced.
“Artificial intelligence promises to accelerate discovery, improve diagnosis and enable more proactive care. But its potential is inseparable from the data ecosystems that support it.
“In the absence of strong economic incentives for deeper integration, the question becomes how the industry is beginning to navigate this constraint and what signals are emerging about the future of healthcare data and AI in women’s health.”
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