Mind the Gap: From Tool to Knowledge Base

Sep 19, 2026

Mind the Gap: From Tool to Knowledge Base introduces an ethical, legal, and societal issues (ELSI) knowledge base within the BBMRI-ERIC Common Service ELSI. It shifts researchers and biobankers from customized ELSI Helpdesk support to self-serve, scenario-based guidance drawn from expert contributors. The article emphasizes user-friendly presentation, avoids legalistic phrasing and long link lists, and stresses sustainability through organizational expert curation and technical maintenance. The knowledge base connects to FAQs, contract and informed consent templates, and best-practice models to support responsible transnational biomedical research.

LanguageEnglish

CategoryPresentations

FormatPDF

Pages5

Reading Time2 min

AccessFree to download

Introduction

Motivation for a novel approach

What the knowledge base should achieve

Practical challenges in transnational biomedical research

Ethical requirements and local enforcement mechanisms

BIOPRESERVATION AND BIOBANKING Volume 00, Number 00, 2018 Mary Ann Liebert, Inc. DOI: 10.1089/bio.2018.0018 Mind the Gap: From Tool to Knowledge Base Michaela Th. Mayrhofer1 and Irene Schl u¨nder1,2 With the ethical, legal, and societal issues (ELSI) Knowledge Base, we introduce a key element of the Biobanking and Biomolecular Resources Research Infrastructure—European Research Infrastructure Consortium (BBMRIERIC) Common Service ELSI, which provides ethical, legal, and societal support for researchers and biobankers involved in transnational research. In contrast to the customized support provided by the ELSI Helpdesk, the ELSI Knowledge Base will be available to the user on a self-serve basis. The information that is made available through a knowledge base comes from multiple sources, usually from several expert contributors who are well versed in the subject matter. The knowledge base provides users with a ﬁrst orientation on the subject matter, as well as allowing them to explore more detailed information if desired in a self-service manner. It is crucial that the information and knowledge provided are shared in a manner that is user friendly. Long lists of links, legalistic language, and multiple links have to be avoided wherever possible. The long-term sustainability and accuracy of a knowledge base need tobe ensured by placing its expert curation and technical maintenance under the responsibility of an organization rather than a research consortium. In its core, it builds on a scenario-based approach using a nonlegalistic language. In addition, the knowledge base connects to frequently asked questions, promotes contract and informed consent templates, how-to-guides, best-practice models, and scripts. The ELSI Knowledge Base is a key element of the BBMRI-ERIC Common Service ELSI, which currently serves biobanks but will be enlarged to serve the biological and medical sciences community. In contrast to the ELSI Helpdesk, which provides customized support, the ELSI Knowledge Base is available to the user on a self-serve basis. The conceptualization of the ELSI Knowledge Base builds on assessments of several ethical, legal, and societal guidance tools that favor a single sustainable knowledge base for closing the knowledge gap by providing practical hands-on guidance for researchers. Ultimately, the ELSI Knowledge Base aims at promoting practical know-how and skills for conducting responsible research. Keywords: knowledge base, ELSI, service, guidance, data sharing, data protection Introduction This article concentrates on ethical and legal ance for researchers in practice and presents a guidnovel resource for guiding researchers and promoting knowledge in ethical, legal, and societal matters in the form of a knowledge base. However, why is a novel approach necessary and what should it achieve? Identifying and navigating through the applicable ethical and legal requirements for conducting biomedical research can be quite a practical challenge for investigators, especially when a research project encompasses participants from more than two countries and jurisdictions. To use biological material and data of human origin in a transnational research context, it has to be taken into account that issues that are well-regulated in one country by a single law (e.g., Biobank Act in Finland1,2), might be regulated by a set of laws in another (e.g., France3) . As a result, practical complications typically follow suit that were either unknown or underestimated when conceiving the project scientiﬁcally.* *The reasons for the delay can be manifold. Typical issues are the underestimated negotiation time for agreeing on a Mutual Transfer Agreement or different procedures and competencies for ethical approvals. 1BBMRI-ERIC, Graz, Austria. 2TMF, Berlin, Germany. ª Mayrhofer and Schl¨under, 2018; Published by Mary Ann Liebert, Inc. This Open Access article is distributed under the terms of the Creative Commo

FAQs

What is the ELSI Knowledge Base intended to do for researchers and biobankers?

It provides self-serve, scenario-based ethical, legal, and societal guidance to help users orient themselves and explore more detailed information as needed.

How does the knowledge base differ from the ELSI Helpdesk?

The ELSI Helpdesk provides customized support, while the ELSI Knowledge Base is designed for self-serve access.

Why does the article argue that users should avoid legalistic language and long link lists?

It stresses the importance of user-friendly sharing of information and recommends avoiding long, cumbersome presentations wherever possible.

Sep 19, 2026

Uploaded by Emma Mercer