Workshop Report WG5: Creating a citizens’ information pack on ethical and legal issues around ICTs: what should be included?
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Type: Working Group Meeting
Location: Museum für Naturkunde Berlin, Berlin
Date: 9th - 10th March, 2020 (to coincide with the Open Science Forum in Berlin)
Duration: 2 day
Background to the workshop
The workshop was organized through a collaboration between: the European Citizen Science Association (ECSA), COST Action 15212, the Institute of Marine Sciences (ICM-CSIC), and the PANELFIT and EU-Citizen.Science projects. This collaboration was led by Jaume Piera, Karen Soacha and Federico Caruso (PANELFIT), Tim Woods (EU-Citizen.Science and PANELFIT) and Katherin Wagenknecht (EU-Citizen.Science). Financial support was provided by PANELFIT (EU grant agreement 788039) and COST Action 15212 (supported by European Cooperation in Science and Technology). Helen Feord of ECSA was responsible for note-taking and writing this report.
The call for participants was made available through the COST Action 15212 website, and promoted through the organizers’ networks. To increase the diversity of participants, in terms of backgrounds, fields of interest and expertise, some people were specifically invited to apply.
Unfortunately the workshop coincided with the start of the COVID-19 outbreak in Europe. As a result, not all of the invited participants were able to travel to Berlin. To allow for their inputs, this report has been produced using a two-step process: (1) drafting the report from the meeting notes made in Berlin, and (2) inviting all participants to make further inputs after the event.
Despite this setback, 17 participants met in Berlin (see Annex 1), representing 11 countries and drawn from the fields of academia (including PhD students and early-career researchers), citizen science, citizens’ groups and the private sector. A further five participants (representing four countries) contributed virtually.
Workshop aims
The aim of this workshop was to ask potential end-users of the citizens’ information pack on legal and ethical issues around ICTs (i.e. citizens and citizens’ groups) the following questions:
- What is your knowledge of the EU’s General Data Protection Regulation (GDPR), and what actions have you taken in response to these regulations?
- What challenges are you experiencing in ensuring the protection and security of your project data, and compliance with the GDPR, within existing data management processes/systems?
- What information/tools/resources do you need to overcome these challenges?
- What are the best formats/channels for receiving, sharing and acting upon this information?
- What is the most appropriate structure/format(s) for the citizens’ information pack?
This workshop supported the aims of Working Group 5 of the COST Action 15212 by contributing towards a framework - namely, legal and ethical requirements for citizen science projects, and the data they collect, store and share - for “the exploitation of the potential of European citizens for science and innovation”.
The end product of the process - the citizens’ information pack on legal and ethical issues around ICTs - will “identify and enhance good practices that can be applied to citizen science projects in different areas” and support efforts to “explore ways for integrating data and knowledge collated through [citizen science] initiatives and suggest mechanisms for standardization, interoperability and quality control”.
The workshop was planned so that it would guide the final content and style of the citizens’ information pack on ethical and legal issues around ICTs, which will be developed through the PANELFIT project, and to ensure that this meets the needs expressed by citizens and citizens’ groups. We aim to verify the findings of this workshop through an online survey, to ensure the views of further citizens and representative groups, including those from other backgrounds and context, are also represented. These findings will be fed back to PANELFIT’s Engagement, Communication and Dissemination Board, which will draft an editorial plan for the citizens’ information pack.
In preparation for this workshop, participants were asked to:
- familiarise themselves with the PANELFIT and the EU-Citizen.Science projects
- identify 2-3 challenges they experience in data protection and security, or the projects/groups they work with experience, and what they would like to know about overcoming these
- read the paper on data and citizen science by Quinn (2018)
- read the paper on vulnerable groups by Peroni and Timmer (2013).
Conclusion and next steps
This workshop provided an important step towards creating a citizens’ information pack, and a version tailored to vulnerable people. It has progressed two essential processes for this work: (1) considering the best structure and necessary content for the information pack; and (2) mapping out who is vulnerable in Europe.
This second process is perhaps the trickier to complete. As this workshop highlighted, while there are several groups that can be classed as vulnerable, and many types of vulnerability, these are not clear, rigid categories. People do not fit into neat, binary categories of ‘vulnerable’ and ‘not vulnerable’; rather, vulnerability is a fluid, dynamic concept, one that changes with a person’s age, (changing) circumstances and through factors beyond their control. Vulnerability is also subjective: one person may feel, or class themselves, as vulnerable whereas someone else, in a similar (or perhaps even worse) situation may not.
Another way of considering this is to view vulnerability as a reflection of the diversity in society, and the relationships between different social groups. Diversity is often related to conflicts, disagreement, stereotypes and discrimination, which can be considered the causes of vulnerability. Thus, the citizens’ information pack could be seen as a tool for diversity management, or diversity promotion.
As vulnerability varies widely within Europe’s populations, so does people’s vulnerability in relation to data rights and privacy. As Table A1 shows, this is not always simple to establish, or assign to particular groups. Some groups that share a type of vulnerability may have different data challenges (e.g. due to their differing contexts), while those with a certain vulnerability may find the data challenges they face shift over time, either improving (e.g. through new technology and laws) or worsening (e.g. as their vulnerability worsens). When looking for concrete solutions, it may be easier to consider the barriers that some vulnerable groups face, and then explore further how each barrier can be lessened or overcome
Lastly, there is a need within Europe for some form of ‘data protection mainstreaming’, similar in its aims to ‘gender mainstreaming’ or ‘age mainstreaming’. In practice, this would ensure that data protection issues - including (and especially) those facing vulnerable groups - are considered in every activity in which data is sought, collected, stored or used. In this way, the citizens’ information pack that PANELFIT will produce could be not only a reference document for those responsible for legal and ethical issues around ICTs, but also a ‘soft’ policy tool to encourage the wider consideration of these issues across Europe.
Next steps
For PANELFIT, the outcomes of this workshop will be used to start planning the citizens’ information pack in more detail. A concurrent step will be to conduct a wider survey of the population about the ethical and legal issues around ICTs, and the challenges they face in this regard. As noted in this report, the views from the workshop participants cannot be considered as representative of all European citizens, being skewed heavily towards academics and those working in the field of citizen science. An online questionnaire or survey is a possible next step in this respect.
For ECSA, COST Action 15212 and EU-Citizen.Science, the workshop’s outcomes should mark a step forward in ensuring that citizen science activities consider the needs of vulnerable groups, in terms of ICTs and data, but also in terms of ensuring the field is open to and inclusive of all groups and citizens in Europe. A follow-up action here will be to share the workshop outcomes (including this report) on the EU-Citizen.Science platform, and with ECSA’s working group on empowerment, inclusiveness and equity. It will also be useful to look at existing definitions of vulnerability in the open data/open science literature and consider how well they apply within a citizen science context, and how they can be translated into understandable definitions for citizens.
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