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Bridging the European Data Sharing Divide in Genomic Science

Authors :
Derecho publico
Zuzenbide publikoa
Molnár Gábor, Fruzsina
Beauvais, Michael J. S.
Bernier, Alexander
Nicolás Jiménez, María Pilar
Recuero Linares, Mikel
Derecho publico
Zuzenbide publikoa
Molnár Gábor, Fruzsina
Beauvais, Michael J. S.
Bernier, Alexander
Nicolás Jiménez, María Pilar
Recuero Linares, Mikel
Publication Year :
2022

Abstract

In this viewpoint, we argue for the importance of creating data spaces for genomic research that are detached from contexts in which fundamental rights concerns related to surveillance measures override a purpose-specific balancing of fundamental rights. Genomic research relies on molecular and phenotypic data, on comparing findings within large data sets, on searchable metadata, and on translating research results into a clinical setting. These methods require sensitive genetic and health data to be shared across borders. International data sharing between the European Union (EU) or the European Economic Area and third countries has accordingly become a cornerstone of genomics. The EU General Data Protection Regulation contains rules that accord privileged status to data processing for research purposes to ensure that strict data protection requirements do not impede biomedical research. However, the General Data Protection Regulation rules applicable to international transfers of data accord no such preferential treatment to international data transfers made in the research context. The rules that govern the international transfer of data create considerable barriers to international data sharing because of the cost-intensive procedural and substantive compliance burdens that they impose. For certain jurisdictions and select use cases, there exist practically no lawful mechanisms to enable the international transfer of data because of concerns about the protection of fundamental rights. The proposed solutions further fail to address the need to share large data sets of local and regional cohorts across national borders to enable joint analyses. The European Health Data Space is an emerging federated, EU-wide data infrastructure that is intended to function as an infrastructure bringing together EU health data to improve patient care and enable the secondary use of health-related data for research purposes. Such infrastructure is implementing new institutions to su

Details

Database :
OAIster
Notes :
This project has received funding from the European Union Horizon 2020 research and innovation program under grant agreement 825835 and the European-Canadian Cancer Network (EUCANCan), a federated network of aligned and interoperable infrastructures for the homogeneous analysis, management, and sharing of genomic oncology data for personalized medicine. MB, AB, and BMK received funding support for this work from the Canada Foundation for Innovation Cyberinfrastructure Initiative; the Ontario Research Fund; the British Columbia Knowledge Development Fund; and the Ministère de l’Économie, de la Science et de l’Innovation for The Cancer Genome Collaboratory project, as well as from the Canada Research Chair in Law and Medicine. FMG is funded by the Deutsche Forschungsgemeinschaft (German Research Foundation)—NFDI 1/1 “German Human Genome-Phenome Archive.” FMG, AB, PN, MRL, and BMK are members of the ethico-legal work package of the EUCANCan consortium. The authors are grateful for the collaborative spirit within EUCANCan and for the open exchange with all members of the consortium, English
Publication Type :
Electronic Resource
Accession number :
edsoai.on1390907134
Document Type :
Electronic Resource