4 June 2025

«Democratising science is a priority at out times»

At a one-day workshop, researchers discuss the challenges of hereditary predisposition to cancer with affected families. The exchange of information, expectations and needs is a win-win situation for both sides. The event, initiated and run by DKF research group leader Maria C. Katapodi, was funded by the SNSF Agora program.

Individuals with a genetic predisposition to cancer bare an up to twentyfold risk for developing several primary cancers during their lifetime. This risk can be averted with risk-reduction surgeries or minimised with early screening and surveillance. Risk management often starts at the age of twentyfive, however, it is know to be not optimal for around a quarter of those affected. Furthermore, dealing with a genetic predisposition to cancer is a burden for both, the patients and their family members, especially since they often encounter lack of appropriate information, support and guidance.

These are main findings from the research projects of the CASCADE consortium, which is headed by Maria C. Katapodi, Professor for Nursing and DKF research group leader. The consortium is dedicated to elucidate research questions relating to personalised healthcare and prevention measures in hereditary breast and ovarian cancer syndrome and Lynch syndrome, which are associated with frequent and early onset of common cancers, such as breast, prostate and colorectal cancer, and with several lethal forms of cancer, such as ovarian and pancreatic cancer.

Enormous interest and commitment

The first workshop for families with a genetic predisposition to cancer took place on 17 May 2025 at the Zentrum Paul Klee in Berne and was fully booked with over 160 participants. Presentations on the latest research in lay language and the introduction of patient support groups and organisations promoting public involvement in research provided relevant information for the audiance and appropriate room for exchange between experts, patients and families. «The audience followed the presentations with great attention. I was particularly impressed by their engagement in the group discussions», Barbara Peters, Head of Communication at the DKF, who provided advice to conceptual aspects and support in the promotion of the event, says.

The event was set-up to take place in four alternating languages. Thanks to simultaneous translation and division into moderated small group discussions participants were able to bring forward their unmet needs and expectations for healthcare and research. This input will serve Maria C. Katapodi and her research colleagues as a basis for further research projects.

«This was an extremely valuable experience at multiple levels. Research findings, such as frequencies and p-values, turned into a face, a smile, and a handshake. Our research findings mean a lot to our participants, especially for cohort studies where long-term commitment from all parties involved is a “must”.

Experiences like this can mobilise the research team, funding agents, and most importantly participants. Democratising science is a priority at out times.»

Prof. Dr. Maria C. Katapodi, Professor of Nursing and DKF Research Group Leader