IARC supports the promotion of citizen participation and ethical research in the European Cancer Mission with the PERIFORMANCE project

Scientists from the International Agency for Research on Cancer (IARC) are participating in the Public Engagement in Research Infrastructures for Mission Cancer: Managing Complexity of Emerging Technologies (PERIFORMANCE) project. PERIFORMANCE is a European Union-funded project that seeks to ensure that cancer research and developments, in line with technological advances such as artificial intelligence (AI) and the European Health Data Space (EHDS), are applied in an ethical, equitable, and transparent manner.

The project, which will run for 3 years, addresses ethical, legal, and societal implications in biobanking and cancer research. The IARC team will investigate the ethical aspects and challenges of implementation of AI within the EHDS. The scientists will consider the digital divide and inequalities in digital health literacy, including how links are established for biobanking with dynamic consent and patient-centred data models.

The overall priorities of the PERIFORMANCE project are to (i) identify and disseminate good practices of participation, transparency, and governance, with a leading role for biobanks as infrastructures connecting research and citizenship; (ii) analyse the impact of AI and the EHDS on trust and social engagement in research; (iii) fund local participatory pilot projects through open calls for proposals; and (iv) provide training and workshops to ensure inclusive, adapted, and sustainable approaches.

The project brings together universities, hospitals, biobanks, policy-makers, and patient associations, among others, to create a European reference framework to ensure inclusive, ethical, and needs-based research that improves prevention, diagnosis, treatment, and quality of life for people with cancer.

PERIFORMANCE is coordinated by the Biobanking and BioMolecular resources Research Infrastructure – European Research Infrastructure Consortium (BBMRI-ERIC) in partnership with IARC and other participants.

Read more about the PERIFORMANCE project