World Ovarian Cancer Coalition Launches Groundbreaking White Paper on Hereditary Ovarian Cancer

Toronto, Canada – 10 December 2024 — The World Ovarian Cancer Coalition [Coalition] has today unveiled a landmark White Paper addressing the critical challenges and innovative strategies required to tackle hereditary ovarian cancer globally. With inherited BRCA1 and BRCA2 mutations accounting for 10-20% of ovarian cancer cases, the report highlights a number of key recommendations aimed at closing gaps in access to genetic testing, leveraging innovative technologies, and addressing disparities across healthcare systems.

Key Recommendation: Universal Genetic Testing : A core recommendation from the White Paper is the implementation of comprehensive genetic testing for tumour and germline mutations, regardless of family history. Research cited in the report demonstrates that universal genetic testing can identify up to 50% more mutation carriers who would otherwise be missed using traditional family-history-based criteria. Additionally, population-wide genetic testing for cancer susceptibility genes has proven cost-effective in various healthcare settings, including high-income countries like the UK, where a study by the Institute of Cancer Research and the Royal Marsden showed significant healthcare savings and improved outcomes.

By adopting a universal testing approach, healthcare systems around the world can better identify individuals at risk and offer tailored prevention and management strategies, ultimately saving lives and reducing long-term healthcare costs.

Clara MacKay , CEO of the Coalition, emphasised: "This White Paper delivers a significant call to action. Policymakers must also consider population-based testing for cancer susceptibility genes, supported by scalable strategies that account for the varying capacities of healthcare systems globally. This approach, supported by evidence, allows us to save lives and improve outcomes on a global scale."

Addressing Global Disparities in Genetic Testing: The White Paper was informed by a global Roundtable discussion held earlier this year featuring leading oncologists, genetic counsellors, and patient advocates.

Dr Julie S. Torode , Chair of the Roundtable and cancer policy expert at King’s College London, highlighted the importance of addressing inequities in genetic testing: "Identifying individuals at heightened risk is essential, but we must learn what works—and what doesn’t—in diverse healthcare settings. Scalable, cost-effective solutions are key to ensuring that these life-saving tools are accessible to all, regardless of geography or income level."

Findings and Recommendations: The White Paper provides a comprehensive analysis of hereditary ovarian cancer and its global landscape. Key findings include:

• Persistent Inequities: Many high-income countries offer routine genetic testing for ovarian cancer, yet uptake remains low due to limited awareness. In low- and middle-income countries, costs and infrastructure pose significant barriers to access.
• Technological Innovations: Emerging technologies such as remote genetic counselling and AI-driven personalised risk assessments can remove logistical barriers and extend the reach of genetic testing services globally.
• Cost-Effective Strategies: Evidence shows that population-wide genetic testing for cancer susceptibility genes can save lives while reducing long-term healthcare costs. Recommended approaches include government-backed initiatives and innovative co-payment models.

Priority Areas for Action: The Coalition calls on healthcare providers, policymakers, and advocacy groups to unite in implementing the following priority actions:

• Expand Education and Training: Equip healthcare professionals with the knowledge to bridge gaps in understanding hereditary cancer risk.
• Implement Universal Testing: Ensure comprehensive testing for tumour and germline mutations, irrespective of family history, becomes a global standard.
• Raise Awareness in Underserved Communities: Develop culturally sensitive campaigns to improve awareness and engagement.
• Strengthen Infrastructure: Build capacity to scale genetic testing and improve outcomes across diverse resource settings.

A Call for Collaboration: As the global burden of ovarian cancer continues to rise, the Coalition underscores the urgency of collaborative action to overcome barriers and ensure equitable access to genetic testing and prevention. By addressing the gaps highlighted in this report, stakeholders have the opportunity to empower women worldwide with the knowledge and resources needed to prevent hereditary ovarian cancer and improve outcomes for generations to come.

About the World Ovarian Cancer Coalition Founded in 2016, the World Ovarian Cancer Coalition is the only global not-for-profit dedicated exclusively to ovarian cancer. Partnering with over 200 advocacy organisations worldwide, the Coalition is committed to ensuring that everyone impacted by ovarian cancer has the best possible chance of survival and quality of life, regardless of where they live.

The Coalition builds on the success of initiatives like World Ovarian Cancer Day (2013) and the Every Woman Study™ (2018). In 2022, the Coalition, in partnership with the International Gynecologic Cancer Society, expanded its reach with the Every Woman Study™: Low- and Middle-Income Edition, covering 22 countries, with findings presented at the 2024 IGCS Annual Meeting. Recently, the Coalition completed the Socioeconomic Burden of Ovarian Cancer in 11 Countries Study, exploring the economic impact on healthcare systems and individuals affected by ovarian cancer. Publications from this research are expected in 2025.

For more information, contact:

Phaedra Charlton Director of Communications and Marketing

World Ovarian Cancer Coalition phaedra@worldovariancancercoalition.org