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BBMRI’s GDPR Conduct of Conduct for Health Research and implications for FP9

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The Biobanking and BioMolecular resources Research Infrastructure - European Research Infrastructure Consortium (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 BBMIR-ERIC will address future related challenges. The seminar will take place on 6 November 2017 in Brussels.

The next few months will be significant for EU research priority setting. Work on FP9 (2021-2027) has begun and the European Commission is expected to publish its proposal in the summer of 2018. Policy orientation discussions are already under way and cover the programme’s overall structure and financing. They will also encompass the long-term sustainability, socio-economic impact, and the use and management of data created by the pan-European research infrastructures, as well as the contribution of these infrastructures to health sciences and health outcomes in Europe.

On 25 May 2018, the General Data Protection Regulation (GDPR) will apply across the EU. BBMRI-ERIC has launched a forum to develop the means to comply and to contribute to the proper implementation of GDPR with a view to benefiting health and medical research. It has also launched a forum to support this process. Through the forum, BBMRI-ERIC is engaging with approximately 80 organisations, representing key stakeholders from across the EU, to draft its GDPR Code of Conduct for health research. This code will be vital for enabling and advancing collaborative health and life sciences research once the GDPR is applied.

The BBMRI-ERIC seminar on 6 November 2017 will focus on how the new data protection environment will determine and affect the use of (sensitive) personal data for health and life sciences in existing and future research projects as well as in collaborations, in addition to ways in which health research communities will approach this. The seminar will also help participants to understand the policy context and priority areas that the post-2020 EU research framework programme could possibly cover. Moreover, it will include debate on how the programme could address the issues concerning biological and medical science research, including the use of personal data, in order for the programme to deliver benefits for the EU’s citizens and economy.

The seminar sessions will cover big data and the European Open Science Cloud, GDPR and the code of conduct for health and life sciences, as well as FP9. Speakers will include Augusto Burgueno Arjona, European Commission; Magali Poinot, IMI2; Brendan Barnes, EFPIA; Lydia Makaroff, European Cancer Patient Coalition; Nathalie Bertels, Big Data Value Association; and other representatives from industry, research, and academia.

The seminar will be followed by a GDPR ‘day of action’ on Tuesday 7 November 2017. This event will engage EU policy- and decision-makers in discussion about the use of personal data for health research with respect to GDPR as well as how health and life sciences organisations, under the lead of BBMRI-ERIC, are preparing for GDPR implementation and compliance.



Seminar date and venue:

Monday, 6 November 2017, 10.00 – 16.00

Science 14, 14b Rue de la Science, Brussels B-1040 (map: https://goo.gl/maps/6DQhCYURwrQ2)


Draft agenda will be available shortly.

Participation in the seminar is free of charge. To attend, please register below.



Background information:

Implementation of the General Data Protection Regulation (GDPR), which will apply from 25 May 2018, will encourage EU organisations to draw up a code(s) of conduct so that they can contribute to the proper application of the GDPR in specific sectors and can demonstrate compliance with the GDPR. A code(s) may be prepared by associations or representative bodies for the approval, registration, and publication by a supervisory authority.

The BBMRI-ERIC Health & Life Sciences GDPR Code of Conduct will help guide researchers and administrative staff, will reduce unnecessary fear about compliance, and enhance data sharing for the progress of health and life sciences research. Since early 2017, BBMRI-ERIC has held multiple working meetings on this topic. On 1 February 2017, it hosted a working meeting in Brussels, bringing together around 30 representatives from the European biological and medical science research infrastructures, policy-makers, medical and health associations, industry representatives, patient advocacy groups, and other interested stakeholders. The aim was to express commitment to be involved in developing the code as well as to discuss and develop a roadmap for a harmonised Health and Life Sciences GDPR Code of Conduct. The February meeting concluded with a common agreement that it would be good to develop a code of conduct and to have a transparent consultation process. More information is available at: http://iscintelligence.com/event.php?id=310.

On 7 June 2017, in Brussels, there was a forum meeting to present the governance concept and a timeline for a BBMRI-ERIC Health & Life Sciences GDPR Code of Conduct, to discuss the needs of patients and Member States, and the perspectives of third countries/international organisations, and to outline the code’s topics and working groups. More information is available at: http://iscintelligence.com/event.php?id=319. While the previous meetings were aimed at discussing the priority issues that need to be addressed by the code and agreeing on its development timeline, a subsequent meeting in Brussels on 26-27 July 2017 brought together the core drafting group to prepare the text of the code. In autumn 2017, this text will be discussed with reference groups and consulted on with the Code of Conduct forum members.

The drafting group for the Health & Life Sciences Code of Conduct comprises BBMRI-ERIC (lead), ECRIN, EMBL (ELIXIR), EATRIS, Euro-BioImaging and other Research Infrastructures in CORBEL, plus EFPIA, EUREC, CESSDA, RD-CONNECT, taking into account social and cultural differences, as well as expertise. BBMRI-ERIC expects to have the first draft of the code ready by the end of this year, followed by a wide public consultation on the draft text in early 2018. The goal is to have the final code document ready for submission for approval by 25 May 2018.

BBMRI-ERIC (http://bbmri-eric.eu/) is a pan-European research infrastructure which provides access to quality-controlled human biological samples, such as blood, tissues, cells or DNA, and associated clinical and research data. It aims to establish, operate and develop a pan-European distributed research infrastructure of biobanks and biomolecular resources to facilitate the access to resources as well as facilities and to support high-quality biomolecular and medical research. BBMRI-ERIC comprises 19 member states and one international organisation, making it one of the largest research infrastructures for health research in Europe.




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