ELSI Dialogues – Beyond the Signature: Rethinking Consent in Biobanking

Consent is a cornerstone of responsible biobanking and biomedical research. However, obtaining consent for the collection, storage, sharing and use of human biological samples and associated data raises complex legal, ethical and practical questions. What constitutes valid consent in the context of biobanking? How should consent address future and unforeseen research uses? What are the implications of the General Data Protection Regulation (GDPR), and how can legal requirements be reconciled with ethical principles and the expectations of patients and research participants? Is there a difference between GDPR consent and consent to participate to research? How many types of consent exist and what are the most suitable ones for the biobanking context?

The webinar will explore the fundamental principles of consent and the key legal, ethical and practical challenges associated with it. The discussion will bring together two experts with backgrounds in law and ethics, alongside an experienced patient representative, who will offer a patient perspective on the challenges of obtaining and providing informed consent. The webinar will feature an interactive discussion, providing an opportunity for patients, patient and public representatives, and other audience members to raise questions, share concerns, and engage with the speakers.

Register here.

Moderator: Dr. Ilaria Colussi (BBMRI-ERIC)

Speakers: 

• Wenkai Li (PhD researcher at the Health and Ageing Law Lab (HALL), Law Science Technology and Society Research Group (LSTS) of Vrije Universiteit Brussel (VUB), Belgium)
• Dr. Deborah Mascalzoni (Group Leader of the ELSI Research Group at the Institute for Biomedicine (IfB) of Eurac Research in Bolzano, Italy, and Associate Professor of Biomedical Ethics at the Centre for Research Ethics and Bioethics (CRB) at Uppsala University, Sweden)
• Olga Valciņa (founder and CEO of the Melanoma Patient Network of Latvia, “Step Ahead of Melanoma”, and founder and board member of the Latvian Association of Oncology Patient Organisations, “OncoAlliance”)

This webinar is offered by the BBMRI-ERIC ELSI Services & Research Department and Stakeholder Forum Patients and Citizens Pillar.