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CORBEL ELSI webinar slides


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The BBMRI-ERIC ELSI Helpdesk is a personalised support service assisting researchers with any ethical, legal and societal questions they may have in the context of research projects. By sharing expertise, the Helpdesk assists researchers in navigating their way through the ethical and legal landscape, offering guidance on topics that are crucial in biobanking, such as informed consent and data protection, in order to promote compliance with regulatory requirements and best practice principles. This webinar is for you if you are interested in finding out more about the ELSI Helpdesk, how it works and what’s happening behind the scenes and screens, as well as the future trajectory of the service.

CORBEL ( is an initiative of eleven new biological and medical research infrastructures (BMS RIs), which together will create a platform for harmonised user access to biological and medical technologies, biological samples and data services required by cutting-edge biomedical research. CORBEL will boost the efficiency, productivity and impact of European biomedical research.

This webinar took place on 10th July 2018 and is part of the CORBEL webinar series. A recording of the webinar is available through the CORBEL website:

For previous and upcoming CORBEL webinars see:

Published in: Science
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CORBEL ELSI webinar slides

  1. 1. The BBMRI-ERIC ELSI Helpdesk – Personalising ELSI Support Presenter: Jasjote Grewal (BBMRI-ERIC) Host: Christiane Hauk (DSMZ) CORBELWebinar Series 10/07/2018
  2. 2. 10/07/2018 This webinar is being recorded
  3. 3. AUDIENCEQ&A SESSION 10/07/2018 Please write your questions in the questions window of the GoToWebinar application
  4. 4. BACKGROUND Since 2015, thirteen ESFRI Research Infrastructures from the field of BioMedical Science (BMS RI) joined their scientific capabilities and services to transform the understanding of biological mechanisms and accelerate its translation into medical care. • biobanking & biomolecular resources • curated databases • marine model organisms • systems biology • translational research • functional genomics • screening & medicinal chemistry • microorganisms • clinical trials • structural biology • biological/medical imaging• plant phenotyping • highly pathogenic microorganisms 10/07/2018
  5. 5. CORBEL MISSION Modern biological and biomedical research involves complex projects and a variety of different technologies. Some of the most important discoveries are made at the interface between different disciplines. CORBEL will harmonise access and services for complex research projects involving more than one RI that offer: • biological and medical technologies • biological samples and • data services 10/07/2018
  6. 6. TODAY’S PRESENTER 10/07/2018 Jasjote Grewal joined BBMRI-ERIC as the ELSI Helpdesk Coordinator in August 2017, prior to which she worked as a Research Fellow in Biolaw at the Centre for Ethics and Law in the Life Sciences, Hannover.Whilst there, she investigated ethical, legal and societal issues (ELSI) in the context of various European and international scientific projects, including biobanking collaborations. Jasjote is a lawyer by training, having qualified as a solicitor in England andWales in 2010 with a niche health and social care law firm.
  8. 8. OVERVIEW ELSI SERVICES ELSI Services: 1.The ELSI Knowledge Base 2.The ELSI Helpdesk 3.Ethics Check The Objective: To support the biobanking community and other BMS research infrastructures by facilitating compliance with regulatory requirements and best practice standards.
  9. 9. OVERVIEW ELSI SERVICES Figure 1: Relationship between the ELSI Knowledge Base, Helpdesk and ELSI Experts
  10. 10. OVERVIEW ELSI SERVICES What is the ELSI Knowledge Base? • A store of information that is available to the user on a self-serve basis. • The information comes from multiple sources, usually from several expert contributors who are well versed on the subject matter. What is the ELSI Helpdesk? • A service that offers customised support by providing practical guidance and information on ELSI issues on a case by case basis. • Primarily intended to serve researchers, biobankers and other BMS RIs located in BBMRI-ERIC Member/Observer countries
  11. 11. THE ELSI KNOWLEDGE BASE The ELSI Knowledge Base is an open-access resource platform, containing practical knowledge and information on relevant ELSI topics. CONTENT
  12. 12. THE ELSI KNOWLEDGE BASE THE LIBRARY We develop and share practical guidelines for researchers in our open access resource platform, which are stored in the Library.
  14. 14. THE ELSI KNOWLEDGE BASE NEXT STEPS Building up the Knowledge Base
  15. 15. THE ELSI HELPDESK CONTENT Background: A federated ELSI Helpdesk was conceptualised in 2016. The aim is to provide customised guidance that is practical, reliable, verifiable and sustainable. It is publicly available and free of charge for BBMRI-ERIC members and observers Who is it for? • It is a personalised support service for researchers biobankers located in Member and Observer Countries of BBMRI-ERIC; • who are involved in biobanking activities; and • who have ethical, legal and societal questions in the context of a research project.
  16. 16. THE ELSI HELPDESK HOW IT WORKS Include the following information: • A telephone number; • An abstract of the research project/intended research project; • Whether there are any non-EU partners on board; and • Any other relevant information
  17. 17. THE ELSI HELPDESK HOW IT WORKS The Request Tracking System
  18. 18. THE ELSI HELPDESK HOW IT WORKS THE ELSI Helpdesk Review Board • Comprised of ELSI experts; • who convene on a monthly basis to review incoming questions. • Review Board members offer their expertise to assess and respond to questions and/or seek further clarifications; and • verify final responses before they are sent to requestors.
  19. 19. THE ELSI HELPDESK ACTIVITIES TO DATE No. of Requests received 20+ Nature of requests Data Protection Informed Consent Ownership Access Policy Training & Education Assistance with mandatory ethics section
  20. 20. ETHICS CHECK
  21. 21. ETHICS CHECK WHAT IS IT? The Ethics Check: • is a service for researchers who are applying for H2020 research projects. • We check and review the compulsory Ethics Self-Assessment section during the application phase. The Aim: • To effectively addresses all relevant ethical, legal and societal issues that may arise within the research project in accordance with regulatory frameworks and ethical standards.
  22. 22. ETHICS CHECK WHO IS THE ETHICS CHECK FOR? Eligibility Criteria: The Ethics Check is available to research projects or programs that: • have a transnational feature involving participants and/or resources that are located in at least one Member or Observer Country of BBMRI-ERIC; • include European or international samples and data flows; • consist of a non-interventional or observational research involving the re-use of existing • human samples, bio-fluids or micro-organisms maintained in biobanks.
  23. 23. ETHICS CHECK with the subject matter “Ethics Check”. GET IN TOUCH Send the following documentation at least 3 weeks prior to the submission deadline: • The full proposal; • the completed Ethics Issue Table in Part A of your proposal; and • your completed Ethics Section in Part B of your proposal.
  24. 24. THE WAY FORWARD Focus Areas: • Training & Education • Webinars Series • Face to face workshops • Emphasis on creating accessible and sustainable services that are user-oriented.
  26. 26. Questions? The BBMRI-ERIC ELSI Helpdesk – Personalising ELSI Support Presenter: Jasjote Grewal (BBMRI-ERIC) 10/07/2018 Please write your questions in the questions window of the GoToWebinar application
  27. 27. NEXTWEBINAR 10/07/2018 The CORBEL webinar series will be going on summer break, and resume in September 2018 Did you know that all our webinars are recorded and available online?