@article{mathieu:hal-05761761,
  TITLE = {{Why is family disclosure of genetic risk so difficult? A collaborative analysis of 685 rare-disease patient experiences}},
  AUTHOR = {Mathieu, Marion and Saliba-Serre, B{\'e}reng{\`e}re and de Montgolfier, Sandrine and Libany, Martine and Altavilla, Annagrazia and Faurisson, Fran{\c c}ois and Malzac, Perrine and Baleydier, Claudie and Bonnaire, Michel and Boureau-Wirth, Amandine and de Carli, Paola and Dekeuwer, Catherine and Depadt, Val{\'e}rie and Derbez, Benjamin and Dien, Maryse and Dujardin, V{\'e}ronique and Geille, Alain and Jarret, Brigitte and Julia, Sophie and Klein, Julien and Le Coz, Pierre and Lahlou-Lafor{\^e}t, Khadija and Leveille, Sylvain and Mallet, Audrey and Marchetti, Isabelle and Marcucci, Laetitia and Nguyen, Karine and Pasquier, Laurent and Pelletier, Val{\'e}rie and Picard, Roger and Pineau, Brigitte and Rouzier, C{\'e}cile and Souqui, Raymond and Tassain, Jean-Marc and Toussaint, Eva and Tronel, Vincent and Zordan, C{\'e}cile},
  URL = {https://hal.science/hal-05761761},
  JOURNAL = {{European Journal of Human Genetics}},
  PUBLISHER = {{Nature Publishing Group}},
  YEAR = {2026},
  MONTH = Aug,
  DOI = {10.1038/s41431-026-02205-8},
  KEYWORDS = {Genetic counseling ; Ethics ; Patient Education ; Genetic disclosure},
  HAL_ID = {hal-05761761},
  HAL_VERSION = {v1},
}