The Role of Ethics in Citizen Participation 

Brought to you by Mª Soledad Rojas and Elisa Sáez from the INTRAS Foundation 

The active involvement of participants is essential in conducting pilot research projects to ensure that they respond to the real needs of citizens as well as meet their expectations and preferences. Their experiences, opinions and perspectives enrich the research process and form the core data of the research. 

However, this involvement requires that the pilot undergoes an ethical review to ensure the well-being, confidentiality and rights of the participants. 

This ethical review also benefits the research team, anticipating possible ethical dilemmas or carrying out modifications suggested by the ethics committee. 

Ethics committees are responsible for reviewing information related to the pilot to ensure that it is conducted ethically at both national and international levels.  

Prior to the start of the study, it is verified that participants are clearly and thoroughly informed of the objectives of the pilot for which they will be recruited or a cover study to avoid influencing the results of the pilot. This process should include the opportunity for them to ask questions and address any concerns, ensuring that they fully understand what their participation will entail. This step not only reinforces the transparency of the study but also ensures that participants give their informed and voluntary consent that can be revoked at any time. 

This consent should include the objectives, rights of participants, confidentiality and privacy policies to ensure proper management. 

The ethics committee also checks the appropriateness of the steps to be taken in the pilot, not just making an approval before the start of the pilot, but also monitoring the progress of the pilot, reviewing adverse events and assessing whether the study should be modified, suspended or stopped if ethical or safety issues arise. 

Additionally, participation in the study requires the expectation of benefits for the individual or community, ensuring that the process has a clear purpose and is free from bias. 

Stakeholder involvement in the DICE project is essential to ensure the development of meaningful solutions, making the inclusion of citizens necessary. As previously mentioned, this involvement occurs within a framework that guarantees compliance with the rights, dignity and well-being of the participants. 

This ethical compliance is beneficial because it guarantees public confidence in the project, with a consortium committed to ensuring the safety and well-being of all stakeholders. It also implies scientific quality, developed under quality participatory methodologies. 

February 4, 2025