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The Fondation Brocher is an essential player in this vital thinking process: one which will help make us aware of the real challenges in using our resources for maximum impact on the health of the people of the world.

 

 

Professor Daniel Wikler, Harvard University

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October 12 - 13, 2021

Health-Citizen Science dilemmas under the GDPR

Schedule:

October 11

Get-to-know dinner at the Brocher Foundation

October 12 – DAY ONE

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

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
Roundtable on ‘sensing’ the expectations for the symposium among the participants
Health Citizen Science and the General Data Protection Regulation
 Citizen science in the medical setting [Robin Pierce]
 Public health interactions with citizen science [Sabine Wildevuur]
 Health policy encounters citizen science [Carsten Lyng Obel]
Coffee break
Ethical dimensions of (health) research with citizen scientists
 A needed focus on diversity in assessing citizen science [Dana Mahr]
 The perspective of the bioethicist and the experience of Brazil [Carlo Botrugno]
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 (13:30-17:30)
Tensions and dilemmas between data protection and open science
 From the 2018 study to present experiences from the SensJus project [Anna Berti Suman]
 Experiences from the US context and the American Citizen Science Association [Lea Shanley]
 The Holland Health Data Cooperative take on the GDPR [Gaston Remmers]

The role of law and regulations in harmonizing openness and data protection
 When the patient/citizen scientist becomes consumer [reflections from Teresa Scassa]
 The JRC study on data management in citizen science projects [Chrysi Tsinaraki]
 Resisting a neoliberalism trend in health and medicine [Motahareh Bollon]

Coffee break

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]
 Focus on Covid reality: health citizen science, pandemic and vaccinations [Katharina Paul]
Reactions from the participants
Live drawings explained by artist [Alice Toietta]
Dinner at the Brocher Foundation
- 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):

Focusing on health citizen science cases, their benefits, implications and challenges:
 The TOPFIT Citizen Lab in Twente [Karin Van Leersum]
 The Patient Science project [Nils Heyen]
 Experiences from the CitiesHealth project [Annibale Biggeri e Bruna De Marchi]

Coffee break

Follows on ongoing projects and pilots:
 Ethical dimensions of participatory epidemiology [Antonella Ficorilli]
 The perspective of Ideas for Change [Valeria Righi]
 The CSI COP project on GDPR and apps [Huma Shah]
--Lunch break and reflexive walk across the domain of the Brocher Foundation--
- Afternoon session (13:00-15:00)
Legal focus: tensions between GDPR concerns and access to information held by authorities in matters concerning public and environmental health [Veronica Dini; Anna Berti Suman]
A network for health citizen science: the ECSA Working Group experience, the survey [Gaston Remmers; Sabine Wildevuur]
Coffee break
Reactions from the participants and reflections towards a future research agenda and advice for practitioners dealing with health-related Citizen Science
Final compilation of live drawings explained by artist [Alice Toietta]

Departures

Place:

Brocher Foundation, Hermance (Geneva, CH)

Organizers:

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.

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