Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium
Large European research consortia in the health sciences face challenges regarding the governance of personal data collected, generated and/or shared during their collective research. A controller in the sense of the GDPR is the entity which decides about purposes and means of the data processing. C...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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F1000 Research Limited
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10521071/ https://www.ncbi.nlm.nih.gov/pubmed/37767227 http://dx.doi.org/10.12688/openreseurope.14825.1 |
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author | Van Veen, Evert-Ben Boeckhout, Martin Schlünder, Irene Boiten, Jan Willem Dias, Vasco |
author_facet | Van Veen, Evert-Ben Boeckhout, Martin Schlünder, Irene Boiten, Jan Willem Dias, Vasco |
author_sort | Van Veen, Evert-Ben |
collection | PubMed |
description | Large European research consortia in the health sciences face challenges regarding the governance of personal data collected, generated and/or shared during their collective research. A controller in the sense of the GDPR is the entity which decides about purposes and means of the data processing. Case law of the Court of Justice of the European Union (CJEU) and Guidelines of the European Data Protection Board (EDPB) indicate that all partners in the consortium would be joint controllers. This paper summarises the case law, the Guidelines and literature on joint controllership, gives a brief account of a webinar organised on the issue by Lygature and the MLC Foundation. Participants at the webinar agreed in large majority that it would be extreme if all partners in the consortium would become joint controllers. There was less agreement how to disentangle partners who are controllers of a study from those who are not. In order to disentangle responsibilities, we propose a funnel model with consecutive steps acting as sieves in the funnel. It differentiates between two types of partners: all partners who are involved in shaping the project as a whole versus those specific partners who are more closely involved in a sub-study following from the DoA or the use of the data Platform. If the role of the partner would be comparable to that of an outside advisor, that partner would not be a data controller even though the partner is part of the consortium. We propose further nuances for the disentanglement which takes place in various steps. Uncertainty about formal controllership under the GDPR can stifle collaboration in consortia due to concerns over (shared) responsibility and liability. Data subjects’ ability to exercise their right can also be affected by this. The funnel model proposes a way out of this conundrum. |
format | Online Article Text |
id | pubmed-10521071 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | F1000 Research Limited |
record_format | MEDLINE/PubMed |
spelling | pubmed-105210712023-09-27 Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium Van Veen, Evert-Ben Boeckhout, Martin Schlünder, Irene Boiten, Jan Willem Dias, Vasco Open Res Eur Open Letter Large European research consortia in the health sciences face challenges regarding the governance of personal data collected, generated and/or shared during their collective research. A controller in the sense of the GDPR is the entity which decides about purposes and means of the data processing. Case law of the Court of Justice of the European Union (CJEU) and Guidelines of the European Data Protection Board (EDPB) indicate that all partners in the consortium would be joint controllers. This paper summarises the case law, the Guidelines and literature on joint controllership, gives a brief account of a webinar organised on the issue by Lygature and the MLC Foundation. Participants at the webinar agreed in large majority that it would be extreme if all partners in the consortium would become joint controllers. There was less agreement how to disentangle partners who are controllers of a study from those who are not. In order to disentangle responsibilities, we propose a funnel model with consecutive steps acting as sieves in the funnel. It differentiates between two types of partners: all partners who are involved in shaping the project as a whole versus those specific partners who are more closely involved in a sub-study following from the DoA or the use of the data Platform. If the role of the partner would be comparable to that of an outside advisor, that partner would not be a data controller even though the partner is part of the consortium. We propose further nuances for the disentanglement which takes place in various steps. Uncertainty about formal controllership under the GDPR can stifle collaboration in consortia due to concerns over (shared) responsibility and liability. Data subjects’ ability to exercise their right can also be affected by this. The funnel model proposes a way out of this conundrum. F1000 Research Limited 2022-06-17 /pmc/articles/PMC10521071/ /pubmed/37767227 http://dx.doi.org/10.12688/openreseurope.14825.1 Text en Copyright: © 2022 Van Veen EB et al. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Open Letter Van Veen, Evert-Ben Boeckhout, Martin Schlünder, Irene Boiten, Jan Willem Dias, Vasco Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title | Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title_full | Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title_fullStr | Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title_full_unstemmed | Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title_short | Joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the GDPR from other partners in the consortium |
title_sort | joint controllers in large research consortia: a funnel model to distinguish controllers in the sense of the gdpr from other partners in the consortium |
topic | Open Letter |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10521071/ https://www.ncbi.nlm.nih.gov/pubmed/37767227 http://dx.doi.org/10.12688/openreseurope.14825.1 |
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