Challenges for citizen science and the EU open science agenda under the GDPR

Research output: Contribution to journalSpecial issueScientificpeer-review

Abstract

Present discussions on the implications of the GDPR for medical practice and health research mostly target the passive collection of health data. This article shifts the lens of analysis to the scarcely researched and rather different phenomenon of the active sharing of health data within the framework of Citizen Science projects. Starting from this focus, the article queries whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims are identified both in abstract terms and ‘in practice’ by analysing three Citizen Science scenarios and drawing parallels with the experience of ‘collective’ Clinical Trials. The limited literature on the topic makes this article an exploratory reflection on key tensions, with the aim of opening the way for further research. This discussion is inspired by the need to guarantee that opportunities of Citizen Science will not be unduly curtailed by the advent of the GDPR but also to ensure that Citizen Science is implemented in ways that are consistent with the GDPR.
Original languageEnglish
Pages (from-to)284-295
Number of pages12
JournalEuropean Data Protection Law Review
Volume4
Issue number3
DOIs
Publication statusPublished - 2018

Fingerprint

EU
citizen
science
health
medical practice
guarantee
scenario
experience

Keywords

  • Citizen Science
  • Open Science
  • GDPR
  • Secondary Use of Health Data
  • Research Exemption

Cite this

@article{73e3c9bf1bf64f6f9a1c44c9163ee071,
title = "Challenges for citizen science and the EU open science agenda under the GDPR",
abstract = "Present discussions on the implications of the GDPR for medical practice and health research mostly target the passive collection of health data. This article shifts the lens of analysis to the scarcely researched and rather different phenomenon of the active sharing of health data within the framework of Citizen Science projects. Starting from this focus, the article queries whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims are identified both in abstract terms and ‘in practice’ by analysing three Citizen Science scenarios and drawing parallels with the experience of ‘collective’ Clinical Trials. The limited literature on the topic makes this article an exploratory reflection on key tensions, with the aim of opening the way for further research. This discussion is inspired by the need to guarantee that opportunities of Citizen Science will not be unduly curtailed by the advent of the GDPR but also to ensure that Citizen Science is implemented in ways that are consistent with the GDPR.",
keywords = "Citizen Science, Open Science, GDPR, Secondary Use of Health Data, Research Exemption",
author = "{Berti Suman}, Anna and Robin Pierce",
year = "2018",
doi = "10.21552/edpl/2018/3/7",
language = "English",
volume = "4",
pages = "284--295",
journal = "European Data Protection Law Review",
issn = "2364-2831",
number = "3",

}

Challenges for citizen science and the EU open science agenda under the GDPR. / Berti Suman, Anna; Pierce, Robin.

In: European Data Protection Law Review, Vol. 4, No. 3, 2018, p. 284-295.

Research output: Contribution to journalSpecial issueScientificpeer-review

TY - JOUR

T1 - Challenges for citizen science and the EU open science agenda under the GDPR

AU - Berti Suman, Anna

AU - Pierce, Robin

PY - 2018

Y1 - 2018

N2 - Present discussions on the implications of the GDPR for medical practice and health research mostly target the passive collection of health data. This article shifts the lens of analysis to the scarcely researched and rather different phenomenon of the active sharing of health data within the framework of Citizen Science projects. Starting from this focus, the article queries whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims are identified both in abstract terms and ‘in practice’ by analysing three Citizen Science scenarios and drawing parallels with the experience of ‘collective’ Clinical Trials. The limited literature on the topic makes this article an exploratory reflection on key tensions, with the aim of opening the way for further research. This discussion is inspired by the need to guarantee that opportunities of Citizen Science will not be unduly curtailed by the advent of the GDPR but also to ensure that Citizen Science is implemented in ways that are consistent with the GDPR.

AB - Present discussions on the implications of the GDPR for medical practice and health research mostly target the passive collection of health data. This article shifts the lens of analysis to the scarcely researched and rather different phenomenon of the active sharing of health data within the framework of Citizen Science projects. Starting from this focus, the article queries whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims are identified both in abstract terms and ‘in practice’ by analysing three Citizen Science scenarios and drawing parallels with the experience of ‘collective’ Clinical Trials. The limited literature on the topic makes this article an exploratory reflection on key tensions, with the aim of opening the way for further research. This discussion is inspired by the need to guarantee that opportunities of Citizen Science will not be unduly curtailed by the advent of the GDPR but also to ensure that Citizen Science is implemented in ways that are consistent with the GDPR.

KW - Citizen Science

KW - Open Science

KW - GDPR

KW - Secondary Use of Health Data

KW - Research Exemption

U2 - 10.21552/edpl/2018/3/7

DO - 10.21552/edpl/2018/3/7

M3 - Special issue

VL - 4

SP - 284

EP - 295

JO - European Data Protection Law Review

JF - European Data Protection Law Review

SN - 2364-2831

IS - 3

ER -