D9.135 – Consensus workshop report on ethical issue
- Catégorie : Rapports
- Publication : jeudi 7 novembre 2019 13:20
D. OUGHTON, C. ESS, L. LIUTSKO, Y. TOMKIV, P. FATTIBENE, S. DELLA MONACO, JF. BARQUINERO, V. CHUMAK, A. SARUKHAN, T. SCHNEIDER, E. CARDIS
Report D9.135- EJP-CONCERT-SHAMISEN SINGS - European Joint Programme for Integration of Radiation Protection Research. 2019.
Ethical issues are central to data privacy use and sharing for the mobile APPs and tools that might be used by citizens after a nuclear accident. This deliverable presents an overview of some of these challenges as identified by co-reflection at workshop held in Oslo in May 2019. The workshop gathered over 30 participants, including APP and tool developers, natural and social scientists, authorities and international organisations.
Discussions covered technical and ethical issues with dosimetry APPs; General Data Protection Regulation (GDPR) and Terms of Service (ToS); Use of APPs in a broader health and well-being context; and Implications for citizen science. During all the discussion sessions, it was noted that the challenges and ethical issues would vary with the context in which the APPs and Tools would be applied (e.g., emergency or recovery phase, different accident or emergency scenarios, routine monitoring, preparedness). While the SHAMISEN-SINGS project focuses on preparedness for and recovery from nuclear accidents, the tools could be relevant within a number of other radiological protection areas (including occupational, environmental or medical applications), each with their own ethical aspects and dimensions, and likely reactions and information needs from users. This also highlights the importance of continuing, trans/multidisciplinary ethical reflection on the challenges. Since both the technology and the potential area of application, as well as the legal framework, are likely to change in time, it is important that these discussions are held “upstream” of both the technical developments and future potential events.
Other key ethical issues included how the data are used, as well as the level of understanding the user has in providing consent to that use. The practical and ethical differences between APPs that provide information and those that advise on action were recognized, both for personal measurements and in citizen science projects. Given that current APPs are largely market driven, questions were raised about the role of authorities and organizations in these developments.
The report concludes with a set of recommendations:
- Dosimetry and health APPs and tools have the potential to contribute to radiation accident management, but there is a need to make ethical issues more visible across all aspects of APP and tool development and applications, including citizen science projects.
- It is important that both technical and ethical issues are addressed and made transparent in the experimental protocol for any post accident study. This would include explaining the links to organizations that might have interest in the results, and their roles and functions; including actors that might use results for the purpose of implementing radiation protection initiatives.
- Dialogue on technical and ethical issues as part of the application of APPs and tools (including in citizen science projects) could raise awareness, promote emergency preparedness, and give the public the opportunity to provide their insights. This would require active interaction between (governmental organizations, members of the public, industry, etc.) to improve the technical developments as well as the overall preparedness and response for/to emergencies.
- At a minimum, any ToS or EULA should contain comprehensive information on what data will be collected and how this will be stored, shared and destroyed. But more interactive approaches to consent to data use and sharing should be encouraged.
- Given the potential public health value in data produced by dosimetry APPs and tools, and the fact that this is at present largely driven by commercial actors, authorities should take a more active role in development and application of these tools, and it should be considered whether an international organisation could take the lead on certification and data management.
Further discussion on the possible application of dosimetry and health related APPs and tools for specific scenarios and phases of emergency preparedness, as well as other radiation protection contexts (e.g., environmental, occupational) would be useful.