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Wolfson Institute of Population Health

New NICE Guideline on familial and genetic risk for ovarian cancer

A new guideline published by the National Institute for Care and Excellence (NICE) on 21 March, ‘Ovarian cancer: identifying and managing familial and genetic risk’, is the product of painstaking work by the topic lead and WIPH Consultant Gynaecological Oncologist Professor Ranjit Manchanda, and an expert committee including Dr Adam Brentnall (WIPH).


The guideline covers genetic/pathogenic variant and ovarian cancer risk assessment, genetic counselling and testing, surveillance, surgical prevention, preventive medications, information and support, and service organization. Around 340,000-440,000 women in the UK carry one of the pathogenic variants. A NICE guideline on high-risk breast cancer has been available for many years, but this guideline for familial ovarian cancer is completely new.

The aim of the guideline is to raise awareness, increase the availability of genetic testing, and allow individuals to take preventive measures, such as surgery, which will lead to fewer people developing ovarian cancer. People who could be carriers, who have already had certain cancers, or have a blood relative who has had breast or ovarian cancer should be referred to genetic services for testing, and offered counselling. People with Ashkenazi or Sephardi Jewish, or Greenlander family backgrounds are at higher risk and are eligible for testing. NICE recommends that genetic services should assess the likelihood of people carrying the genes using a recognised mathematical model or criteria based on family history, and test for one of 9 pathogenic variants. People with female reproductive organs who carry one of these variants should be offered information and support as part of discussions about the best option to reduce their risk of developing ovarian cancer. The most effective intervention is surgery to remove the ovaries, and in some cases a hysterectomy to also reduce the risk of endometrial cancer.

Professor Manchanda said: This Guideline fulfils a huge unmet need, and will be extremely helpful and important for patients, health professionals and commissioners/providers. This has been a huge effort over 2.5 years, and I am grateful to the entire committee, the team at NICE and all stakeholders who have contributed.



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