GSS EU Science Funding Gateway

Research activities that do not involve traditional ‘research participants’ –  Example is research assembling and analysing large volumes of existing (anonymised) research data, data produced as a by-product of people’s use of technological devices and services, and other categories of non-personal data.

The proposed actions should:

• Analyse the strengths and weaknesses of the current approaches to ethics review in their capacity to address the challenges above (new technologies, new players, new forms of collaboration and partnerships, new human rights related framework, etc.), and, on this basis, propose concrete ways of adapting ethics committees (working methodologies, composition, etc.) in view of matching the new challenges. As regards the role of the bodies, it is important not to limit the scope to the ex-ante ethics review, prior to the start of the research concerned, but to also cover the monitoring during the implementation of the research and innovation activities. Practical ways to support the work of relevant stakeholders, notably research funders should also be identified, including the development of quality criteria or benchmarking tools to assist in the evaluation of existing research ethics oversight mechanisms. The applicability of the proposed approaches should also be tested via the use of specific case-studies (involving non-EU partners where appropriate);
• Organise stakeholder consultations and interdisciplinary mutual learning initiatives to enable the identification of best practices for the ethics oversight of new modes of research. As cutting-edge research is of cross-border character, this action should involve institutions that engage in research ethics review and relevant related activities, including at the international level;
• Develop guidelines and corresponding training and education materials to enable ethics experts involved in ethics reviews to assess compliance with the new ethics standards resulting from the new challenges addressed under point 1 and above;
• Train Framework Programme ethics appraisal scheme experts (250-300). Close attention should be paid to gender balance, as well as to gender equality- and diversity-related ethical aspects. Feedback of the trainees should be used to improve the trainings.