Topic: COVID-19 Research and ELSI

The world is facing an unprecedented public health challenge with the COVID-19 pandemic; this has necessitated numerous efforts being deployed by governments, health agencies and individual institutions – including in the biobanking community – to develop effective tests, toolkits, treatments and vaccines to stem its spread and help fight it.

To achieve this goal, the collection, analysis and timely sharing of samples and related data becomes instrumental in collective global research efforts. Aligned to these efforts is the prevalence for automated data processing and digital technologies such as location data and contact tracing applications as part of the toolkits.

In this respect, biobanks are important infrastructures for access to these samples and data. Besides availability, quality and technical infrastructures, also ethical, legal and societal issues (ELSI) are particularly crucial in this regard. Public health ethics, personal data protection, ethics of data sharing, protection of consent and vulnerability as well as compliance issues within international data sharing have gained urgency in COVID-19 research.

BBMRI Resources

Webinar: COVID-19 and Ethical, Legal and Societal Issues

This web conference from BBMRI-ERIC’s ELSI Services & Research team is focused on the ethical issues encountered and addressed during the COVID-19 outbreak in relation to biobanking, looking at cases from Italy and Germany. Additionally, it addresses legal and societal aspects, which ultimately touch upon the intersection between clinical routine and research. The presentations are followed by an interactive discussion.

BBMRI-ERIC ELSI Services & Research Q&A on COVID-19 & ELSI

This document not only answers the questions posed during the webinar but ventures into much detail on the topics raised as a result. It also showcases two examples from Germany (presented by Prof. Roland Jahns) and Italy (presented by Prof. Marialuisa Lavitrano), as well as a detailed commentary on contact-tracing-apps from a legal perspective (presented by Gauthier Chassang). The document thus lays the foundation for further discussion on ELSI and COVID-19 in the context of biobanking.

Informed Consent to the Collection, Storage and Use of Biological Materials for COVID-19 Research

Informed Consent Template for biobanking practices regarding COVID-19 research. 

Guidelines and recommendations 

European Data Protection Board: Statement on the processing of personal data in the context of the COVID-19 outbreak. Adopted on 19 March 2020

Several considerations are taken into account in this document to guarantee the lawful processing of personal data. In all cases, it should be recalled that any measure taken in this context must respect the general principles of law and must not be irreversible.

European Solidarity and the Protection of Fundamental Rights in the COVID-19 Pandemic

This is a statement issued by the European Group on Ethics in Science and New Technologies in which they call for vigilance about the necessity, evidence, proportionality of any policy and technological intervention that, even temporarily, suspends fundamental rights.

Responsibility of Research Ethics Committees during the COVID-19 Pandemic

This document outlines the position of the European Network of Research Ethics Committees (EUREC) with 7 rules to follow for responsible research. 

Maximising the accessibility of COVID-19 research results

The EC has launched a manifesto to maximise the accessibility of research results in the fight against COVID-19.