Circulation of personal data and non-personal data within the European Research Area for research and health purposes
Abstract
The availability and circulation of data, information, knowledge and materials are essential in all fields of research, but they are particularly important in a period in which it is necessary to tackle a global phenomenon like the COVID- 19 pandemic. Awareness of the importance of the circulation of information derived from data, the European Commission has been elaborating a strategy for the circula- tion and sharing of personal and non-personal data. The European strategy needs the data to circulate and be shared in the economic, academic, and social environments. To achieve those objectives, EU documents use the metaphor of building a ‘European Data Area’, that is to say, legal, economic, and cultural frameworks governed at the continental and national levels, such as European Research Area (‘ERA’, see Article 179 TFEU) and the proposed European Health Data Space (‘EHDS’). An analysis of the current legislation seems to indicate several legal constraints on the circulation of data (information, knowledge and material), able to affect the building of an effective European Data Area. These limitations aim at protecting individual rights, such as privacy or other interests. However, such limitations to the circulation of data may affect other relevant rights and interests such as freedom of research and health. For this reason, this paper intends to show what are the legal means to find the points of equilibrium between the different viewpoints and allow the sustainable function of the European Data Area. Because proper global governance of health data and materials is required, the paper tries to the analysis of the main EU instruments which at this moment are able to regulate it, in order to implement an effective system for the exchange of data, in the meantime that the scientific community is waiting for the European Data Protection Board (EDPB) guidance on the processing health data for research purposes, still pending.
Downloads
Published
Issue
Section
License
Copyright Agreement with AuthorsAuthors submitting a paper to JOAL automatically agree to confer a limited license to JOAL if and when the manuscript is accepted for publication. This license allows JOAL to publish a manuscript in a given issue, by any means, anywhere in the world. Authors whose submissions have been accepted then have a choice of:
- Dedicating the article to the public domain. This allows anyone to make any use of the article at any time, including commercial use. A good way to do this is to use the Creative Commons Public Domain Dedication Web form; see http://creativecommons.org/license/publicdomain-2?lang=en.
- Retaining some rights while allowing some use. For example, authors may decide to disallow commercial use without permission. Authors may also decide whether to allow users to make modifications (e.g.translations, adaptations) without permission. A good way to make these choices is to use a Creative Commons license.
- Go to http://creativecommons.org/license/.
- Choose and select license. Choose "generic" if you are in the U.S. and "text" for JOAL articles.
- What to do next — you can then e–mail the license html code to yourself. Do this, and then forward that e–mail to JOAL’s editors. Put your name in the subject line of the e–mail with your name and article title in the e–mail.
- Retaining full rights, including translation and reproduction rights. Authors may use the statement: © Author 2013 All Rights Reserved. Authors may choose to use their own wording to reserve copyright. If you choose to retain full copyright, please add your copyright statement to the end of the article.
