The National Institute for Health and Care Excellence (NICE) criteria used to decide who should be referred by GPs for further breast cancer risk assessment and specialist care misses up to 95% of women under 50 who will go on to develop the disease in the next 10 years, new research by researchers at the University of Cambridge and The Institute of Cancer Research, London, has found.
Using BOADICEA – a comprehensive risk assessment tool developed at the University of Cambridge with funding from Cancer Research UK – researchers identified eight times as many women in this age group who developed breast cancer as the NICE criteria.
Breast cancer is the most common cancer worldwide, with steady increases in incidence over the last decades. It accounts for around one in four cases of cancers and 15% of cancer deaths in women, and is one of the leading causes of death in women under 50. Identifying women at higher risk can allow for additional screening or preventive treatment.
In England, most women at higher risk of breast cancer are identified after being referred by their GP for further assessment and specialist care. The assessment with their GP is based on family history, following criteria set out by NICE.
However, in research published today in the British Journal of Cancer, a team of researchers showed that the NICE criteria fail to identify as many as 95% of women under 50 who are at higher-than-average risk of breast cancer and 95% of women who go on to develop breast cancer within 10 years.
The team analysed data from 1,258 women aged under 50 years recruited to the Breast Cancer Now Generations Study between 2004 and 2011.
They compared how good the NICE criteria and several risk assessment approaches using the BOADICEA risk model were at identifying those women who would go on to develop breast cancer. BOADICEA combines factors such as family history, lifestyle, reproductive history and genetic information.
Previous studies have shown that multifactorial risk models can identify more women at increased risk of breast cancer than family history alone. This is the first study to directly evaluate this approach in a UK population-based cohort of women under 50.
Completing a risk assessment with the full BOADICEA model for all women aged under 50 would result in 26.5% of women being categorised as at above-population level risk and referred for further assessment. This would include 34.8% of women under 50 who develop breast cancer within 10 years.
By comparison, the current NICE criteria would result in 1.4% of women under 50 being referred for further assessment, which would include just 4.4% of those women who develop breast cancer.
A main reason for the disparity, say the researchers, is because three-quarters of women (73%) under 50 years who develop breast cancer within 10 years have no family history of breast cancer, the key criterion in the NICE guidelines.
Dr Juliet Usher-Smith from the Department of Public Health and Primary Care, University of Cambridge, the study's senior author, said: "We need to get better at identifying women at highest risk of breast cancer so that we can intervene early, when there are more options for treating, or even preventing, their disease.
"The current NICE criteria used in general practice are missing up to 95% of women under 50 who will go on to develop breast cancer. It's time to look again at these criteria in the light of our findings."
The researchers recognise that changing the criteria – offering the full BOADICEA risk assessment to all women under 50, for example – would be far more resource intensive and lead to more referrals, many of whom will not develop breast cancer.
Professor Montserrat Garcia-Closas from The Institute of Cancer Research, London, said: "There will be a balance to strike: the NICE criteria are much easier to implement, but miss a large proportion of women at elevated risk. But a full risk assessment including genetic testing will place a heavy burden on resources.
"Ultimately, it will be a trade-off between the practical, resource, and cost implications of data collection and risk assessment, and the potential benefits and harms associated with accurate and inaccurate classification of women."
A second study from the team, also published in the British Journal of Cancer, found strong support among the public for proactive approaches to breast cancer risk assessment for women aged 30–49, rather than waiting for women to come forward with concerns about their family history.
Women preferred proactive invitations, rather than having to ask their GP, and supported the use of approaches that identify more women at higher risk, even if this requires more assessments, including genetic testing. The most popular options were those that invited all women for assessment and used more comprehensive risk tools, such as BOADICEA.
The next step is to test how multifactorial risk assessment could be implemented safely, equitably, and cost-effectively in routine care. This is being evaluated by multiple groups, including UK-based research led by Dr Usher-Smith and colleagues in Cambridge on breast cancer risk assessment in general practice .
The research was supported by Cancer Research UK and Breast Cancer Now.
Dr Simon Vincent, chief scientific officer at Breast Cancer Now, said: "Finding new ways to identify women at increased risk could help to prevent some breast cancers or detect them earlier, when treatment is more likely to be successful.
"These findings highlight the limitations of NICE's current referral criteria, and so this research must now be carefully considered as part of the current review of its Family History guidelines. However, it's equally important that any changes come with the needed investment in family history services, so they can be implemented effectively and fairly across the NHS.
"Overall, this study highlights the value of long-term research like the Breast Cancer Now Generations Study, which is helping us better understand who is most at risk of developing breast cancer and why."
Dr Sowmiya Moorthie, senior strategic evidence manager at Cancer Research UK, said: "Exploring different ways to identify women with a higher risk of breast cancer could help people receive more personalised care.
"The current UK approach, which relies on women under 50 self-presenting, misses many women with a higher risk of breast cancer who could benefit from targeted support and guidance on how to manage their risk. Further research is needed, however, to understand the impact of adopting a different approach, including on staffing and equipment. Any changes must be accessible and equitable, taking into consideration the anxiety that extra referrals might cause for women.
"Everyone can take steps to reduce their cancer risk, such as maintaining a healthy weight and cutting back on alcohol. Anyone who notices a change that is unusual for them should speak to their GP, as early diagnosis can improve outcomes."
Reference
Frost, R, et al. Comparison of NICE criteria with the BOADICEA multifactorial risk model to guide breast cancer risk assessment and referral amongst women under age 50 within primary care. BJC; 4 Aug 2026; DOI: 10.1038/s41416-026-03547-2
Dennison, RA, et al. Priorities for breast cancer risk assessment in UK women under age 50: A survey and discrete choice experiment. BJC; 4 Aug 2026; DOI: 10.1038/s41416-026-03546-3
