Review
Open access
Aug 2026
Why is family disclosure of genetic risk so difficult? A collaborative analysis of 685 rare-disease patient experiences.
Difficulties of sharing information about genetic risks, for medical purposes, with family members are well known to patients with rare genetic diseases and healthcare professionals. To understand the mechanisms underlying the difficulties associated with the family disclosure of genetic risk (FDGR) process, an online...
Marion Mathieu, B. saliba-serre, S. de Montgolfier et al.
· European Journal of Human Ge... · 0 citations