Biobanks, new technologies and the challenges of the present and the future

Authors

DOI:

https://doi.org/10.12795/IESTSCIENTIA.2024.mon.07

Keywords:

Biobanks, Informationally projected corporality, Scientific and biomedical research, Artificial Intelligence, European Health Data Space

Abstract

This study focuses on biobanks and their crucial role in the field of scientific and, in particular, biomedical research. From this perspective, it tackles the issue of informationally projected corporality, which «embodies» the genetic and health data stored in biobanks, for the purpose of defining a modern Habeas Data, capable of providing effective responses and an adequate protection in the digital and algorithmic era. From this viewpoint, the innovative legal landscape

of the European Union is analysed, placing emphasis on its global leadership in the fields of data protection, artificial intelligence and the creation of the European Health Data Space. Conclusively, this study suggests that the legal framework of the European Union may provide a valuable model for the definition of global governance for biobanks.

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Fuentes Normativas

Fuentes del Derecho de la Unión Europea

Reglamento (UE) 2016/679 del Parlam-ento Europeo y del Consejo de 27 de abril de 2016 relativo a la protección de las personas físicas en lo que respecta al tratamiento de datos personales y a la libre circulación de estos datos y por el que se deroga la Directiva 95/46/CE (Reglamento General de Protección de Datos).

Propuesta de Reglamento del Parlamento Europeo y del Consejo por el que se establecen normas armonizadas en materia de inteligencia artificial (ley de inteligencia artificial) y se modifican determinados actos legislativos de la Unión.

Propuesta de Reglamento del Parlamento Europeo y del Consejo sobre el Espacio Europeo de Datos Sanitarios.

Observación general del comité de derechos económicos, sociales y culturales

ONU: Comité de Derechos Económicos, Sociales y Culturales (CESCR), Observación general núm. 25 (2020), relativa a la ciencia y los derechos económicos, sociales y culturales (artículo 15, párrafos 1 b), 2, 3 y 4, del Pacto Internacional de Derechos Económicos, Sociales y Culturales), 30 de abril de 2020, E/C.12/GC/25.

Published

2024-06-25

How to Cite

Fanni, S. (2024). Biobanks, new technologies and the challenges of the present and the future. IUS ET SCIENTIA, 167–186. https://doi.org/10.12795/IESTSCIENTIA.2024.mon.07
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