Dynamic consent and health democracy
Using a pragmatic research approach, embedding patients the whole process long, we are contributing to develop an integrated research program within the SIRIC CARPEM, addressing, in the field of translational research for cancer, the issues of patients’ information and consent, research results return, data and samples sharing, data linkage and health democracy. In this program we aim to build an “ethics by design” e-dynamic consent platform and test both the feasibility and the acceptance of such a platform in real life.
Observatory of translational research practices
Our team is also building an observatory of translational research practices within the CRC ‘s team practices to identify, analyze and deliberate about the ethical issues rising from the research, and to develop strategies to respond to these ethical issues and to propose procedure, if applicable (for instance, recommendations before IRB review process). To reach this goal, the team proposes support actions dedicated to the promotion of ethical, legal and good research practices for CRC teams, thus creating a Research ethics consultation service according to the model developed in US Clinical Translational Science Award (CTSA) institutions: to provide legal and regulatory information to researchers.