TRACER
With the aim of bringing huge improvements to the lives of patients and families affected with sickle cell anemia and Diamond-Blackfan anemia syndrome, the TRACER consortium develops innovative cell therapies with curative potential. Developing such cell therapies depends on the donation of blood from healthy donors as well as affected patients. Their donation is used to produce induced Pluripotent Stem Cells (iPSCs).
Implementing such therapies comes with great responsibility towards individual donors of cell(line)s and patients, as well as to society as a whole. In line with the requirements of Responsible Research & Innovation (RR&I), we introduce an ethical framework of four criteria to guide the work of our Consortium: Availability, Acceptability, Accessibility, and Affordability (the 4A framework).
Our RR&I work package establishes the connection with all relevant stakeholders: the consortium partners who first must make the therapies Available; patients, their families, patient organizations, and the cell donors for whom the options must be Acceptable, clinicians and healthcare organizations for whom the therapies must become Accessible, and the parties involved in decision making in health care policy and law for whom the therapies must be Affordable and legal.