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L’utilité de ce genre d’institutions est incontestable. Car le monde moderne est sans cesse confronté à des innovations, médicales ou autres, qui s’appliquent à l’homme ou à son environnement proche. Ce lieu est donc nécessaire pour préparer la matière intellectuelle qui sera ensuite transférée aux citoyens afin que ceux- ci puissent se prononcer quant à la légitimité de ces innovations.


Professeur Axel Kahn, le célèbre généticien français, lors de l’inauguration de la Fondation Brocher


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Le Cycle Brocher organise de nombreuses conférences au cours de l'année. La plupart des conférences sont disponibles en podcast

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12 - 13 octobre 2021

Health-Citizen Science dilemmas under the GDPR


October 11

Get-to-know dinner at the Brocher Foundation
From 18:30 to 20:30 at Villa Brocher

October 12 – DAY ONE

- Morning session (9:00-12:15):

(9-9:30) Setting the scene: the active sharing of health data within the framework of Citizen Science projects and in the broader context of Open Science [Anna Berti Suman]
 The symposium idea and background
 The EDPL study of 2018, 3 years after

(9:30-10) Roundtable on ‘sensing’ the expectations for the symposium among the participants

(10-11) Health Citizen Science and the General Data Protection Regulation
 Citizen science in the medical setting [Robin Pierce]
 Health policy encounters citizen science [Torben Sigsgaard and Carsten Lyng Obel]
 Public health interactions with citizen science [Sabine Wildevuur]

Coffee break

(11:15-12) Ethical dimensions of (health) research with citizen scientists
 A needed focus on diversity in assessing citizen science [Dana Mahr]
 New technologies, ethics and data protection: between law in the books and law in action [Carlo Botrugno]

(12-12:15) Reactions from the participants
Live drawings explained by artist [Alice Toietta]

--Lunch break and reflexive walk across the domain of the Brocher Foundation—

- Afternoon session (13:30-17:00)

(13:30-14:30) Tensions and dilemmas between data protection and open science
 From the 2018 study to present experiences from the SensJus project [Anna Berti Suman]
 The pilot idea of open access, visual consent forms [Bela Pinheiro]

(14:30-15:30) The role of law and regulations in harmonizing openness and data protection
 Resisting a neoliberalism trend, the perspective of consumer law [Motahareh Bollon]
 The JRC study, data management in citizen science [reflections from Scassa and Tsinaraki]
 The Holland Health Data Cooperative take on the GDPR [Gaston Remmers]

Coffee break

(15:45-16:45) Health citizen science from the lens of sociology
 When health citizen science meets environmental crises [Bruna De Marchi]
 From self-tracking to self-expertise [Nils Heyen]
 COVID-19 vaccination governance: valuing knowledge production and expertise in contemporary democracies [Katharina Paul]

(16:45-17:00) Reactions from the participants
Live drawings explained by artist [Alice Toietta]

Dinner from 18:30 to 20:30 at Villa Brocher

- 21:00: Presentation of the book ‘Legal, social and ethical perspectives on health & technology’ edited by Motahareh Bollon and Anna Berti Suman

October 13 – DAY TWO

- Morning session (8:30-12:00):

(8:30-10:15) Focusing on (environmental) health citizen science cases, benefits, implications & challenges:
 The experience of Pulsaqua in supporting Open Science [Sandra de Vries]
 Data management in the NOSE project, ARPA Sicilia [Anna Abita]
 Experiences from the CitiesHealth project [Annibale Biggeri e Bruna De Marchi]

Coffee break

(10:30-12:00) Follows on ongoing projects and pilots:
 Ethical dimensions of participatory epidemiology [Antonella Ficorilli]
 The TOPFIT Citizen Lab in Twente [Karin Van Leersum]
 The CSI COP project on GDPR and apps [Huma Shah]
 The Patient Science project [Nils Heyen]

--Lunch break and reflexive walk across the domain of the Brocher Foundation—

- Afternoon session (13:00-15:00)
(13-13:30) Tensions between GDPR concerns and access to information held by authorities in matters concerning public and environmental health [Veronica Dini; Anna Berti Suman]
(13:30-14:00) A network for health citizen science: the ECSA Working Group experience, the survey [Gaston Remmers; Sabine Wildevuur]

Coffee break

(14:15-15:00) Reflections towards a future
research agenda and advice for practitioners
Final compilation of live drawings explained by artist [Alice Toietta]



Brocher Foundation, Hermance (Geneva, CH)


Outline of the Symposium: Present discussions on the implications of the General Data Protection Regulation (GDPR) for medical practice and health research mostly target the passive collection of health data. This workshop proposal 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, we will query whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims will be 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 studies and literature on the topic makes this workshop 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 for health research 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.