This research project, elaborated in collaboration with Eurordis (https://www.eurordis.org/), aims to study the genetic information disclosure to a patient's family in case of a diagnosis of rare genetic disease, and to propose solutions to improve the efficiency and acceptability of this procedure in the future.
This European scale study aims to identify and review the different legal framework and ethical recommendations elaborated in European countries to disclose genetic information to family members.
You can find further information here.
If you are a geneticist or genetic counsellor please and you would like to take part, Please complete the questionnaire (https://columbo.univ-amu.fr/index.php/589445?lang=en). It should take about 10 minutes. Your input would be very much appreciated.
Please contact Marion Gottrau if you have any questions.