Start of work on information notices and patient consent forms – principle of free and informed consent – for genetic testing in a health care setting (rare diseases and cancers)

The first task addressed by the working group was to provide professionals with operational documents in an ethical manner, necessary to start the first sequencing.    

Indeed, two types of documents must be submitted to patients by the medical specialist before any diagnosis in the framework of the plan:

The broad composition of the working group responsible for the creation of these two types of documents made it possible to take into account all the subjects identified.

The working group also sought support from the output from many forums.

The Parliamentary office for evaluating scientific and technological choices (OPESCT), professional and learned societies in genetics at national, European and international level, as well as the framework of several European projects made it possible to lay solid foundations for reflection.