Health first, genetics second: exploring families' experiences of communicating genetic information
作者： Laura E Forrest , Lisette Curnow , Martin B Delatycki , Loane Skene , MaryAnne Aitken
关键词: Consultand 、 Psychology 、 Family communication 、 Genetic Condition 、 Interview data 、 Proband 、 Genetics 、 Fragile X syndrome 、 Genetic counseling 、 Mutation (genetic algorithm)
摘要: Genetic information may have health and reproductive implications for the proband and their family members. The responsibility for communicating this information within families …
nature.com
sci-hub.se 参考文章(32)
Andrea Sudell, To tell or not to tell: the scope of physician-patient confidentiality when relatives are at risk of genetic disease. Journal of Contemporary Health Law and Policy. ,vol. 18, pp. 273- 296 ,(2001)
K Forrest, SA Simpson, BJ Wilson, ER Van Teijlingen, L McKee, N Haites, E Matthews, To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics. ,vol. 64, pp. 317- 326 ,(2003) , 10.1034/J.1399-0004.2003.00142.X
Regina Kenen, Audrey Arden-Jones, Rosalind Eeles, We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer (HBOC). Psycho-oncology. ,vol. 13, pp. 335- 345 ,(2004) , 10.1002/PON.745
Laura E Forrest, Martin B Delatycki, Loane Skene, MaryAnne Aitken, Communicating genetic information in families--a review of guidelines and position papers. European Journal of Human Genetics. ,vol. 15, pp. 612- 618 ,(2007) , 10.1038/SJ.EJHG.5201822
Salvador Minuchin, Families and Family Therapy ,(1974)
Joanna H. Fanos, John P. Johnson, Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. American Journal of Medical Genetics. ,vol. 59, pp. 85- 91 ,(1995) , 10.1002/AJMG.1320590117
Bobbi McGivern, Jessica Everett, Geoffrey G Yager, Robert C Baumiller, Amanda Hafertepen, Howard M Saal, Family communication about positive BRCA1 and BRCA2 genetic test results Genetics in Medicine. ,vol. 6, pp. 503- 509 ,(2004) , 10.1097/01.GIM.0000144014.91237.A1
Carma L. Bylund, Paul Schrodt, Dawn O. Braithwaite, Kathleen M. Galvin, Family Communication: Cohesion and Change ,(1982)
Christine Lasset, Catherine Nogu�s, Dominique Stoppa-Lyonnet, Philippe Vennin, Hagay Sobol, Claire Julian-Reynier, Fran�ois Eisinger, Fran�oise Chabal, Disclosure to the family of breast/ovarian cancer genetic test results: patient's willingness and associated factors. American Journal of Medical Genetics. ,vol. 94, pp. 13- 18 ,(2000) , 10.1002/1096-8628(20000904)94:1<13::AID-AJMG4>3.0.CO;2-T
Jane C. A. Raupach, Janet E. Hiller, Information and support for women following the primary treatment of breast cancer. Health Expectations. ,vol. 5, pp. 289- 301 ,(2002) , 10.1046/J.1369-6513.2002.00191.X