People who have an increased risk of carrying genes linked to ovarian cancer could be offered genetic testing on the NHS, it is announced today.
Anyone can carry a gene linked to ovarian cancer, including women, men, trans and non-binary people, and can pass it on to their children, but only about 3% of people know they have a high-risk gene, according to the National Institute for Health and Care Excellence.
A newly published guideline from NICE aims to raise greater awareness and increase the availability of genetic testing, allowing them to take preventive measures such as surgery.
NICE says individuals who could be carriers should be referred to genetics services for testing and offered counselling. This could include people who have had certain cancers, or if a blood relative has had breast or ovarian cancer.
It recommends genetics services assess the likelihood of people carrying the genes using a recognised mathematic model such as the Manchester scoring system, or criteria based on family history, and test for one of nine identified pathogenic variants: BRCA1, BRCA2, MLH1, MSH2, MSH6, RAD51C, RAD51D, BRIP1 and PALB2.
People with a 10% probability of carrying a high-risk gene are tested at the moment, but the new guideline will mean that individuals with as low a probability of 2% are tested depending on their age.
Anyone who carried one of the genes should be offered information and support as part of discussions about the best option for reducing their risk of developing ovarian cancer.
NICE says the most effective intervention is surgery to remove the ovaries, which should happen no earlier than age 35, or 45 depending on the type of gene found.
Evidence suggests that between 340,000 and 440,000 women in the UK carry 1 of the pathogenic variants, but it is not known how many men, trans women or non-binary people registered male at birth are at risk. This is because they may not be aware they have a gene making them at higher risk and have not sought testing.
This guideline will help to build a better picture of how many people have the high-risk genes as more people come forward for testing, NICE said.
NICE chief medical officer Professor Jonathan Benger said: “We aim to raise awareness of people’s risk, helping them get the best supportive care and reducing the devastating impact ovarian cancer can have on people and their families.
“While there will be an initial upfront cost associated with setting up multidisciplinary teams and increasing genetic testing, the risk reducing surgery we recommend could save lives while also saving the NHS money and resources in the long run.”
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