ELSI
November 6th, 2024
New podcast episode – ELSI Dialogues: Communicating with patient citizens on implementing the European Health Data Space (EHDS)
This article is 828 words – a six-minute read. “Without the patient citizen’s data, there is no future for research” This episode takes you to a works ...read more
September 18th, 2024
BBMRI-ERIC ACADEMY – 1ST ELSI SYMPOSIUM: ETHICAL, LEGAL AND SOCIETAL INSIGHTS AND OUTLOOK FOR BIOBANKS AND BIOMEDICAL RESEARCH
This article is 206 words and is a one-minute read. The BBMRI-ERIC, UNIMIB and IARC organised Symposium “Ethical, Legal and Societal Insights & Outlook for ...read more
November 20th, 2023
ELSI team addresses trust, value and gender aspects of AI and infrastructures at the 4S 2023 conference
This article is 540 words and is an approximate 4-minute read BBMRI-ERIC’s ELSI team presented the scientific outcomes of several EU projects on trust, valu ...read more
November 20th, 2023
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 ...read more
October 31st, 2023
New podcast and video: ELSI Dialogues – The Incorporation of Sex and Gender in Medical Research
Introduction The medical community is moving on a path towards more personalised and effective medical treatments and therapies for everyone. In doing so, it is c ...read more
July 13th, 2023
New podcast and video: ELSI Dialogues – An Introduction to the Belgian Biobank Legislation
Introduction Biobank legislation is not harmonised at the European Union level, and the Member States have taken considerably divergent approaches in how they reg ...read more
Integration of the Sex and Gender Dimension in Life Sciences Research
Learn how to integrate the sex and gender dimension into your life sciences research at this free F2F Train-the-Trainer course organised by BSC (Bioinfo4Women ...read more
June 6th, 2023
Joint Statement: Health organisations define EHDS’ opt out required for life saving research
On 6 June, BBMRI-ERIC joins together with 31 other health stakeholders to share views on specific recommendations for a potential opt-out mechanism in the future ...read more
April 5th, 2023
Two new ELSI genomic research relevant publications released
The BBMRI-ERIC ELSI team are delighted to share two new genomic research relevant publications: Published in BioSocieties, ‘Post-identifiability in changing ...read more
February 15th, 2023
New podcast episode: ELSI Dialogues – Why ELSI Matters!
“I think an ELSI expert is often seen as a patch for projects from the natural sciences. You can ask this ELSI expert anything that has to be solved in a certai ...read more
October 21st, 2021
Call for abstracts for a workshop and edited volume on “Ethical, legal, and social issues of artificial intelligence in biobanking”
DEADLINE EXTENDED to 16 NOVEMBER 2021! Artificial intelligence (AI) systems and big data analytics in biobanking are essential components to deliver improved indi ...read more
July 13th, 2021
Call for Abstracts for Nordic Permed Law Symposium and European Journal of Health Law (EJHL) special issue on Genome Editing, Health Innovation and Responsible Regulation
Members of the BBMRI community are invited to submit abstracts for a symposium on genome editing on 3-4 November 2021 and a subsequent special issue on Genome Edi ...read more
Privacy Challenges in the Health Sector through Emerging Technologies
Join our colleague Dr. Ilaria Colussi on 6th July at the Marsilius-Bruckenseminar Sommersemester 2021 organised by the University of Heidelberg: “Privacy Ch ...read more
GDPR harmonisation is the only way to protect cancer research: an ESMO webinar
Fragmented implementation and interpretation of the General Data Protection Regulation 2016/679 (GDPR) of the European Union (EU) at a local level are posing obst ...read more
ELSI Webinar : GDPR and Biobanking – Book Review – Meet the Authors
The Springer Book “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe” is available for open access since a couple ...read more
May 4th, 2021
Welcome Ilaria Colussi, our new Legal Officer!
In April 2021, we welcomed Ilaria Colussi to the BBMRI-ERIC Headquarters team. She is a Legal Officer within the ELSI Services & Research unit, mainly concent ...read more
April 16th, 2021
BBMRI-ERIC/Biobank Norway digital workshop: Hospital-based biobanks for biomedical research
Biological samples collected from patients can potentially be used to advance medical research. European countries are progressively establishing procedures to sy ...read more
March 8th, 2021
Report on the assessment of the EU Member States’ rules on health data in the light of GDPR
In the context of the Single Framework Contract Chafea/2018/Health/03 between the EUHealthSupport Consortium and the Consumers, Health and Food Executive Agency ...read more
February 25th, 2021
Task Force Research Ethics Committees
Mission Statement The mission of the Task Force Research Ethics Committees (TF REC) is to map the procedures of national and regional RECs in order to identify th ...read more
ELSI Webinar: Biobanking with children
On Wednesday 17 March 2021, 14:00 – 15:30 CET Biobanking with children is a practical vector of empowerment and engagement. Without having to expose the ...read more
January 25th, 2021
ELSI Webinar – Futureproofing Biobanks’ Governance
On Tuesday, Feb 2, 2021 from 15:00 to 16:00 CET By Alessandro Blasimme, PhD – Department of Health Sciences and Technology, Health Ethics & Policy Lab ...read more
Webinar: Psychosocial characteristics of potential participants in biobanking – a study on the Polish population, by Jakub Pawlikowski (BBMRI.pl)
Advances of biomedical research based on biobanks collecting human biological material are highly dependent on the successful recruitment and participation of hum ...read more
December 15th, 2020
Soon published – “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe”
Springer Book “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe” – soon available open access! R ...read more
December 10th, 2020
Biobank Sweden’s Legal Helpdesk Representatives
The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more
December 9th, 2020
“The human body in scientific research and medical practice. A transdisciplinary approach”
BBMRI.pl has published a monograph “The human body in scientific research and medical practice. A transdisciplinary approach” edited by Jakub Pawlikow ...read more
December 2nd, 2020
Join BBMRI-ERIC as Legal Officer
BBMRI-ERIC is looking for a Legal Officer based in Austria to support our ELSI team on ethical, legal and societal issues in biobanking and biomolecular resources ...read more
Workshop: Ethically and socially responsible governance of research biobanks in the Baltic states
The aim of this workshop on 29 October 2020 is to exchange experience and discuss current ethical and social problems of research biobank governance in the Baltic ...read more
October 12th, 2020
Animation released on ELSI Services for Life Science Research Infrastructures
An animation commissioned by BBMRI-ERIC within the H2020 project CORBEL shows how Life Science Research Infrastructures can help researchers with ethical, legal a ...read more
Webinar: Ethical, Legal and Social Issues in human microbiome biobanking
Human microbiome research has the potential to increase our understanding of how health and disease are affected by the complex relationship between human, our dw ...read more
Workshop: Looking back, going forward
Henrietta Lacks and the first immortalized human cell line, HeLa, have been influential in shaping both science and technology, from the development of the polio ...read more
October 6th, 2020
Biobank Sweden’s legal helpdesk
The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more
CINECA Webinar: Status Update Code of Conduct: Teaming up & Talking about it
The CINECA webinar series continues with a presentation by BBMRI-ERIC’s Head of ELSI Sergices & Research Dr. Michaela Th. Mayrhofer on the status of the ...read more
September 11th, 2020
Survey on Intellectual Property and Research
A lack of clarity has been identified around the topic of intellectual property rights (IPR) in the research context for the use of biological resources (i.e. bi ...read more
September 10th, 2020
Meet our Team – Mónica Cano Abadía
This week, we’re getting to know Mónica Cano Abadía, one of our ELSI Services Officers. ELSI stands for Ethical, Legal and Societal Issues. Hi, Mónica! ...read more
August 24th, 2020
Meet our Team – Kaya Akyüz
This week, we’re getting to know Kaya Akyüz, one of our ELSI Services Officers. ELSI stands for Ethical, Legal and Societal Issues. Hi, Kaya! What does a ...read more
Webinar: Ethical handling of incidental findings in research
Presenter: Eline Bunnik, PhD, Erasmus MC, BBMRI.nl Moderator: Melanie Goisauf, BBMRI-ERIC In biomedical research involving human subjects, incidental fin ...read more
May 18th, 2020
Recording of Webinar: COVID-19 and Ethical, Legal & Societal Issues
The recording of our webinar on COVID-19 and Ethical, Legal and Societal issues is now online! The webinar focused on the ethical issues encountered and addressed ...read more
Web Conference: COVID-19 and Ethical, Legal & Societal Issues
This web conference will first and foremost focus on the ethical issues encountered and addressed during the COVID-19 outbreak in relation to biobanking, focusing ...read more
CINECA Webinar: Code of Conduct: Teaming Up & Talking About It
The CINECA webinar series continues with a presentation by Dr. Michaela Th. Mayrhofer (BBMRI-ERIC) on Status Update Code of Conduct: Teaming up & Talking abou ...read more
February 27th, 2020
Job Vacancy: ELSI Services Officer (Graz)
BBMRI-ERIC is hiring an ELSI Services Officer to report to our headquarters in Graz, Austria. Download the vacancy note here or read on for details! Job Ti ...read more
CPDP 2020 Data Protection and Artificial Intelligence
Brussels, Thursday 23 January 2020 at 08:45 – Area 42 – Registration at La Cave The panel is co-organized by the research infrastructure BBMRI-ERIC an ...read more
Graz Biomedical Research Workshop
Graz Biomedical Research Workshop Dates: May 11-15, 2020 Location: Online workshop Note: Module 1 (May 11 – May 13) and Module 2 (May 13 – May 15) can be book ...read more
BBMRI-ERIC Webinar – Biobanks and registries – what’s the difference?
Title: Biobanks and registries – what’s the difference? Speaker: Dr Mary Wang, Fondazione Telethon in Italy Date and Time: 28 November 2019, 14:00-15:0 ...read more
Updates to the Code of Conduct for Health Research
Our ELSI team has been busy working on the Code of Conduct for Health Research website. Stay up-to-date by reviewing the latest today. ...read more
BBMRI-ERIC Webinar – Material and Data Transfer Agreements (MTA/ DTA)
Title: Material and Data Transfer Agreements (MTA/DTA) Speaker: Dr Olga Tzortzatou, Biomedical Research Foundation of the Academy of Athens Date and Time: 3 Apri ...read more
Biobank Sweden Launches ELSI Helpdesk
The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more
FAQ on the GDPR available in Polish
We are pleased to announce that the FAQ on the GDPR, one of our most popular downloads, are available in Polish now. Click here for our FAQ on the GDPR in Polish ...read more
CORBEL webinar
Title: The BBMRI-ERIC ELSI Helpdesk – Personalising ELSI Support Speaker: Jasjote Grewal (BBMRI-ERIC) Date: July 10, 2018 Time: 15:30 CEST The BBMRI-ERIC ELSI H ...read more
GBN workshop on legal regulations on incidental findings
Should biomaterial donors be informed of a BRCA mutation, which could trigger breast cancer, if this is discovered as an incidental finding in a study, for exampl ...read more
BBMRI Poland holds national conference
Co-organised by the Independent Medical Sociology Unit, the Department of Ethics and Human Philosophy and the BBMRI.pl consortium, a national conference titled Th ...read more
GDPR: Final Guidelines on Consent and Transparency
The Article 29 Data Protection Working Party (WP 29) published the final Guidelines on Consent under Regulation 2016/679 (wp259) on Friday last week and the one ...read more
Data in Question survey receives 400 responses
What social, ethical and legal challenges do researchers and stakeholders in the field of biobanking face that impact practices related to the handling and sharin ...read more
BBMRI-ERIC Webinar – The GDPR and Health Research
Speaker: Dr Victoria Chico, University of Sheffield Time: 14:00-15:00 (Central European Summer Time) Summary: The enforcement date for the General Data Protection ...read more
Ethical review of biobank-based research in Italy
BBMRI.it, our Italian National Node, recently co-developed two key ELSI matrices for good practice in biobanking research. At the same time, an agreement with the ...read more
EDPS Ethics Advisory Group 2018 report
The European Data Protection Supervisor Ethics Advisory Group has published a report on the GDPR, identifying and describing “the most crucial issues for th ...read more
Call for Examples ‘How Biobanking Makes a Difference in Society’
How does biobanking help to improve individual health(care)? What is the added value of biobanking? What has been achieved and made possible as a result of bioba ...read more
BBMRI-ERIC replies to public consultation
BBMRI-ERIC has recently submitted its comments on the Article 29 Working Party Guidelines on Consent under Regulation 2016/679 (wp259) and Transparency under Regu ...read more
Code of Conduct Forum session at CPDP 2018
Organised by BBMRI-ERIC Industry – Academia – Healthcare professionals CPDP, the Computers, Privacy and Data Protection 2018 conference is taking place ...read more
Survey on ELSI challenges in biobank-based research
The Data in Question survey consists of 25 questions on some of the challenges of obtaining and sharing biological samples and data for research purposes in bioba ...read more
Public Consultation on WP29 Guidelines on Consent (GDPR)
The Article 29 Working Party has adopted a document titled “Guidelines on Consent under Regulation 2016/679” to clarify the requirements of the EU GDP ...read more
Code of Conduct for Health Research
The Drafting Group met for the second time face to face on 22-23 November 2017 in Paris. The aim of the meeting was to first and foremost to share findings and f ...read more
ETHICAL REVIEW FOR BIOBANK-BASED RESEARCH
The growing complexity of the use of existing data highlights some gaps in the ethical review model currently in use across Europe. Reports from scientists highli ...read more
GDPR Code of Conduct for Health Research and Implications for FP9
BBRMI-ERIC has been working tirelessly to understand the future of health research in the changing panorama of data governance and EU funding. As part of this eff ...read more
Seminar: GDPR Code of Conduct for Health Research and Implications for FP9
BBMRI-ERIC is hosting a seminar to assess the impact of the GDPR on FP9 health research and examine how the Code of Conduct for Health Research being developed by ...read more
BBMRI-ERIC Horizon scanning survey: 5 quick questions to help us help you
The BBMRI-ERIC Common Service ELSI has prepared a very brief survey to find out what you think are the important ethical, legal, and policy issues facing biobanki ...read more
Inserm workshop 246
Management and Reuse of Health Data: Methodological Issues This workshop will provide insights and tools regarding open data, FAIR data management, data d ...read more
BIOETHICS SYMPOSIUM
The Bioethics Symposium at IMBA will discuss the main challenges arising from recent advancements in life sciences. New technologies like stem cell research, orga ...read more
Summary Report on the BBMRI-ERIC Working Meeting on Health and Life Sciences GDPR Code of Conduct
On 1 February 2017, BBMRI-ERIC held a working meeting in Brussels, bringing together around 30 representatives from the European biological and medical science r ...read more
Answers to FAQs on EU GDPR – New Version Available Now
On May 24, 2016, the Regulation of the European Parliament and of the Council on the Protection of Natural Persons with regard to the Processing of Personal Data ...read more
New OECD Council of Ministers Recommendations on Health Data Governance
The OECD Health Ministers welcomed the Recommendation of the OECD Council on Health Data Governance at their meeting in Paris on 17 January 2017. The Recommendati ...read more
News about GDPR Implementation and Guidance from the Art.29 DPWP
The Article 29 Working Party (“WP29”) has issued new guidance on three important aspects of the new General Data Protection Regulation (“GDPR”), which com ...read more
Revised version of the CIOMS Ethical Guidelines for Human Research
The Council for International Organizations of Medical Sciences (CIOMS) last week finalized the latest revision to its ethical guidelines for health research invo ...read more
New WMA Declaration of Taipei on HDB published
On behalf of the CS ELSI Task Force on International Organisation Policy Assessment and Monitoring Task Force (TF IO Policy), we inform you that the draft WMA dec ...read more
Primer on Law and Ethics for Researchers involved in Biobanking
News from B3Africa: In most jurisdictions, researchers have a legal, as well as a moral, duty to ensure that their research adheres to national standards and reg ...read more
COE ADOPTED REC ON BIOLOGICAL MATERIALS
The Committee of Ministers of the Council of Europe adopted a new Recommendation on research on biological materials of human origin on 11 May 2016. The current ...read more
FAQs on the General Data Protection Regulation
On 14 April 2016, the European Parliament adopted the Regulation of the European Parliament and of the Council on the Protection of Natural Persons with regard ...read more
EU GENERAL DATA PROTECTION REGULATION ADOPTED THIS WEEK
On Thursday April 14, the European Parliament has adopted the EU General Data Protection Regulation (GDPR). The legislation will likely come into force in the sp ...read more
A REFERENCE BOOK ON ETHICS AND LAW FOR HEALTH PROFESSIONALS INVOLVED IN THE USE OF HUMAN BIOLOGICAL SAMPLES
biobanques de recherche or Ethics and Regulation of Research Biobanks”, written in French, in collaboration with the BIOBANQUES Ethics and Regulation Depar ...read more
ELSI 2.0 + EUCELLEX PROJECT SATELLITE SYMPOSIUM BURSARIES AVAILABLE
*Bursaries for Early Career Researchers now available* Dear All, We are delighted to announce that a limited number of bursaries are now available to subsidise e ...read more
ELSI2.0 AND EUCELLEX PROJECT SATELLITE SYMPOSIUM AT THE INTERNATIONAL ASSOCIATION OF BIOETHICS
ELSI 2.0 (https://elsi2workspace.tghn.org/) and EUCelLEX (https://www.eucellex.eu/) Project Joint Symposium ‘Exploring International Policy Developmen ...read more
BBMRI-ERIC WELCOMES THE DETAILS ON THE GENERAL DATA PROTECTION REGULATION
“BBMRI-ERIC has played a vital role to improve the GDPR“, says BBMRI-ERIC’s Director General Prof. Jan-Eric Litton. BBMRI-ERIC has met with sev ...read more
The BBMRI-ERIC Quality Management service is co-funded within ADOPT BBMRI-ERIC, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 676550.
The BBMRI-ERIC Quality Management service is co-funded within SPIDIA4P, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733112.
