Workshop Report WG5: Creating a citizens' information pack

Workshop Report WG5: Creating a citizens’ information pack on ethical and legal issues around ICTs: what should be included?

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Photo by C. Göbel and CA15212

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

Excerpts from the Report:

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:

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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