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New Podcast Episode – ELSI Dialogues: Cancer survivorship at the core of research
This article is 700 words and a three-minute read.
“The words that we use do not simply describe reality. They shape how we understand it.”
June’s BBMRI-ERIC ELSI Dialogues session was centred around the meaning and connotations of the term Cancer survivorship. More broadly it discussed how language shapes our understanding of the impact of cancer on people’s lives. Four invited speakers shared their expertise and lived experiences with cancer and the advocacy for a more inclusive, participatory and ethically grounded model of cancer research.
The terms one uses to describe themself and the language used in media can influence how a person copes with a life changing event like cancer diagnosis and everything that follows after that. With improved dianostics and treatment options, more and more people can live for many years after their diagnosis. The term Cancer Survivor tries to properly address the live of people with and after cancer. Virginia Sanchini, Assistant Professor of bioethics, sets the term Cancer Survivor in a broader context:
“The words that we use do not simply describe reality. They shape how we understand it. I think the survivorship narrative has been extremely important and in many ways very positive. Moving from the idea of the cancer victim to that of the cancer survivor.”
From an ethical perspective, however, even a mostly positively framed term needs to be assessed critically. As the story of every person dealing with cancer is unique there is not one single term that can properly describe everyone’s situation. Merel Hennink, Secretary of the Board of Cancer Patients Europe and a self-described longterm responder to lung cancer treatment, shared her experiences:
“There’s a lot of discussion within our community about what we call ourselves. Some are saying living with lung cancer, some are saying thriving with. We don’t want to be just a cancer patient who has survived, but we also don’t want to be a survivor because then you are separated from the cancer and it is part of ourselves.”
Some terms can be motivating and encouraging for one person but at the same time stressful and disheartening for another. Richard Stephens, experienced patient advocate, shares his view as a cancer patient:
“The words are really important, but you don’t know what the words mean to me unless you try them out on me and you ask me.I don’t like this idea that the cancer and treatment is a battle and it’s a struggle, especially not when the end eventually does come. I really do not want anyone to write an obituary that says he lost his fight.”
We need to measure quality of life instead of measuring only the number of years.
Laying emphasis on the words we use to talk about cancer is one facette of seeing it in a holistic way. Beyond clinical outcomes, cancer survivors face long-term physical, psychological, social, and economic consequences, including barriers to employment, insurance and full societal participation. These realities raise critical questions about equity, data use, informed consent and the fair distribution of innovation. The EU Mission on Cancer aims to improve the lives of more than 3 million people affected by cancer by 2030. Maria Theodoridou, European Cancer Patient Coallition, argues for a needed shift in defining how we assess the success of cancer therapies and other interventions, to better understand how to move forward:
“The basic question is not how long does a person live, but how well does this person live after cancer, during cancer, and under what conditions. We need to measure quality of life instead of measuring only the number of years.”
Speakers:
Virginia Sanchini (Assistant Professor of bioethics, Department of Oncology and Hemato-Oncology, University of Milan, Italy; Visiting Professor, Center for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium)
Maria Theodoridou (Secretary of the Board of Directors of ELLOK Hellenic Cancer Federation and President of the Cancer Patient Support Association “Living well with Cancer” in Heraklion, Crete)
Richard Stephens (cancer survivor, co-Chair of the UK’s national research group into Living Well with and beyond Cancer)
Merel Hennink (Secretary of the Board of Cancer Patients Europe, expert advocate)
Moderators:
Dr. Melanie Goisauf (BBMRI-ERIC), Dr. Zisis Kozlakidis (IARC/WHO)
This webinar is offered by ELSI Services & Research Department at BBMRI-ERIC.
More BBMRI-ERIC ELSI recordings and events
Stay informed with our ELSI Dialogues and webinars. Upcoming events are advertised on our events page. Including the upcoming 2025 ELSI Symposium in October addressing Ethical, Legal, and Societal Aspects in View of Recent EU Legislation.
This webinar is supported by the canSERV project, which aims to deliver cutting-edge cancer research services to scientists across EU member states, associated countries, and beyond and PERIFORMANCE, a pioneering project designed to transform and reshape the stakeholder engagement in cancer research by addressing the ethical, legal, and societal implications (ELSI) of cancer research and emerging technologies. Both projects are funded by the EU.
