New podcast and video: ELSI Dialogues – Organoids: Scientific, ethical and regulatory aspects

Introduction

Organoids are defined as three-dimensional (3D) cell culture systems that can be called “mini-organs” as they mimic some of the key multicellular, anatomical and even functional characteristics of real organs. Organoids are praised as a substitute for animal models in preclinical studies. At the same time, organoid technology raises issues around informed consent or privacy of donors.

This episode of ELSI Dialogues features multidisciplinary experts discussing ethical, regulatory, and scientific aspects of organoid technology. Following a brief introduction in organoid research, a special focus is placed on biobanking from the patient perspective. The panellists discuss trust, trustworthiness, therapeutic misconception, and the need for regulation. They also challenge definitions and the consequences of terminology such as ‘donation’ and ‘mini-organ’.

This is a collaborative effort between the ELSI Services & Research Department and the Stakeholder Forum Patient Pillar of BBMRI-ERIC.

Access the learning

Originally a live webinar, the podcast and video are presented by Melanie Goisauf with contributions from Zisis Kozlakidis, María Berdasco Menéndez, Signe Mežinska, and Mike Lensink.

Video

Podcast

BBMRI-ERIC Podcast

“Without the patient citizen’s data, there is no future for research.”

Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.

The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” – which will serve research, innovation, policy making and regulatory purposes.

The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data.

Why does communicating about EHDS matter?

Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?

This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.

The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.

Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.

bbmri-eric website

I am looking for information as

Researcher

Industry

Patient

Citizen

Member States