TY - JOUR
T1 - Introducing key elements regarding access to personal data for scientific research in the perspective of developing innovative medicines
AU - Herveg, Jean
AU - Altavilla, Annagrazia
N1 - Publisher Copyright:
© 2020 Copyright 2020 by Koninklijke Brill NV, Leiden, The Netherlands.
PY - 2020
Y1 - 2020
N2 - This article aims at opening discussions and promoting future research about key elements that should be taken into account when considering new ways to organise access to personal data for scientific research in the perspective of developing innovative medicines. It provides an overview of these key elements: the different ways of accessing data, the theory of the essential facilities, the Regulation on the Free Flow of Non-personal Data, the Directive on Open Data and the re-use of public sector information, and the General Data Protection Regulation (GDPR) rules on accessing personal data for scientific research. In the perspective of fostering research, promoting innovative medicines, and having all the raw data centralised in big databases localised in Europe, we suggest to further investigate the possibility to find acceptable and balanced solutions with complete respect of fundamental rights, as well as for private life and data protection.
AB - This article aims at opening discussions and promoting future research about key elements that should be taken into account when considering new ways to organise access to personal data for scientific research in the perspective of developing innovative medicines. It provides an overview of these key elements: the different ways of accessing data, the theory of the essential facilities, the Regulation on the Free Flow of Non-personal Data, the Directive on Open Data and the re-use of public sector information, and the General Data Protection Regulation (GDPR) rules on accessing personal data for scientific research. In the perspective of fostering research, promoting innovative medicines, and having all the raw data centralised in big databases localised in Europe, we suggest to further investigate the possibility to find acceptable and balanced solutions with complete respect of fundamental rights, as well as for private life and data protection.
KW - General Data Protection Regulation (GDPR)
KW - data access
KW - essential facilities
KW - innovative medicines
KW - non-personal data
KW - personal data
KW - public sector information
KW - scientific research
UR - http://www.scopus.com/inward/record.url?scp=85091638317&partnerID=8YFLogxK
U2 - 10.1163/15718093-bja10011
DO - 10.1163/15718093-bja10011
M3 - Article
SN - 0929-0273
VL - 27
SP - 195
EP - 212
JO - European Journal of Health Law
JF - European Journal of Health Law
IS - 3
ER -