PANELFIT
Participatory Approaches to a New Ethical and Legal Framework for ICT
Objectives
Changes in the regulation of ICT research and innovation are opening up a new scenario. It is ex-pected that stakeholders, policy makers, and end users adapt to them as soon as possible. This, however, might be hard, especially for small and medium-sized enterprises (SMEs). PANELFIT is firmly committed to facilitating this adaptation process by producing a set of editable, open access Guidelines, validated by two data protection agencies. Once produced, they will serve as operational standards able to reduce the ethical and legal issues posed by ICT technologies while promoting innovation and market growth, enabling high-quality job creation and ensuring an adequate level of privacy and security/cybersecurity.
Outputs
- Suggest possible concrete improvements to the current regulatory and governance framework, both at the EU and the national level
- Create mutual learning and support tools and to promote networking among stakeholders and policy makers
- Increase the quantity and quality of the information available to policy makers, professionals, researchers, journalists and the public.
All these outcomes will be produced by a co-creation process involving policy makers, stakeholders, and end-users. They will all participate in the creation of the main outcomes of the project through a range of engagement activities that includes workshops, public consultations, encounters, surveys, etc. This will be combined with a strong communication and dissemination strategy that includes numerous activities, such as webinars, MOOC courses, public debates, a constant use of a web site and social networks and the creation of a Platform for Mutual Learning, which is meant to become the reference forum for the discussion of the issues at stake even after the end of the project.
Key project results/activities for RECs and ethics experts
The PANELFIT project addressed the ethical and legal issues surrounding ICT (Information and Communication Technology) research and innovation. D5.3, “Report on the governance of data protection ELI in ICT research and innovation,” focuses on the challenges arising from the interaction between RECs, data protection bodies, and researchers, with the primary goal of considering necessary adaptations in ethics review when processing personal data in ICT research.
One aspect highlighted in the report is the unclear scope of data protection governance in ICT research. The existing legal and ethical frameworks surrounding data protection are either too broad or too narrow, making it challenging for both researchers and ethics review bodies to navigate. The report underscores the need for clarity in the relationship between research ethics and data protection regimes.
RECs are hindered by their unclear roles in data protection; this was revealed by a survey and workshop held with REC members. They lack clarity regarding cooperation with data protection bodies and data protection officers. Also, the insufficient coordination among RECs at the national and international level may lead to delays in review processes and discrepancies in outcomes. The report emphasises the importance of networks in clarifying roles, promoting standardisation, and disseminating good practices.
While RECs originally focused on protecting research participants from harm, they now grapple with the ethical implications of large-scale personal data use in both interventional and non-interventional studies. This necessitates a clear definition for the role of RECs in data protection governance. The report proposes various roles for RECs, from separating legal aspects of data protection from ethics review to fully integrating them.
Furthermore, the report reveals diverse practices among RECs in reviewing data protection issues, including the assessment of technical protective measures and the legal basis for data processing. The lack of clarity in roles and responsibilities may lead to inconsistent practices, the duplication of work, and increased risks for research subjects.
Duration
November 2018 - October 2021
Website
Cordis Entry
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Research Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.
