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ELSI Helpdesk

What does it do?

BBMRI-ERIC provides support on ethical, legal and societal issues related to biobanking activities through its Common Service ELSI. Among other things, the ELSI-group is offering practical interpretation on new legislation. It also monitors relevant ethical and legal frameworks in development and communicates publications, research results, surveys, and informs about relevant meetings. We are also setting up a federated Helpdesk. The vision and aim is to make the Helpdesk available, feasible, practical, usable, reliable, verifiable and sustainable.

This Helpdesk will provide general information on topics that are crucial for biobanking, regarding for example informed consent, data protection and support on ethical questions. It will also offer customised help. The practical tools to help provide this service are currently under development together with IT experts.

 

Who is it for?

The Helpdesk offers support on ethical, legal and societal issues related to biobanking activities. It is primarily intended for users located in Member Countries of BBMRI-ERIC.

 

The challenges:

Offering this service is faced with some challenges. The field covers many questions intimately connected to fundamental legal rights, and involves ethical and societal issues that often are politically controversial. Different countries have different regulations, professionals bring different perspectives and different expertise, and the knowledge of genetics and genomics is uncertain. Researchers will always have to reflect upon, and be responsible for, their practice themselves: both legally and ethically. But the BBMRI-ERIC Common Service ELSI will provide tools and expertise to navigate within this landscape of reflection.

 

What have we achieved so far?

Updated version of the FAQs on the General Data Protection Regulation

Contribution to the draft WMA Declaration on ethical considerations regarding health databases and biobanks

Comments to the draft Council of Europe’s Recommendation (2006)4 on research on biological materials of human origin

Tools

 

Who to contact?

elsi@helpdesk.bbmri-eric.eu

 

Which standard contracts to take into consideration? 

MTA/DTA templates can be found under Publications: Standard Contracts (e.g., MTA/DTAs)

 

Which ethical/legal instruments to take into consideration?

Overview of binding and non-binding instruments in Europe, in addition to the national laws and requirements in the respective country of your research. Consider that additional instruments might be of relevance in the context of your specific research project.

 Binding instruments: 

Non-binding instruments:


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