Health first, genetics second: exploring families' experiences of communicating genetic information
Laura E Forrest, Lisette Curnow, Martin B Delatycki, Loane Skene, MaryAnne Aitken
EUROPEAN JOURNAL OF HUMAN GENETICS | NATURE PUBLISHING GROUP | Published : 2008
Genetic information may have health and reproductive implications for the proband and their family members. The responsibility for communicating this information within families generally lies with the proband or consultand. Previous research has explored the barriers and facilitators to communication, particularly in families affected with familial cancer syndromes. This study is an exploration of families' experiences, which aims to elucidate the process of communicating genetic information in families affected with non-cancer genetic conditions. The methodology involved 12 semi-structured interviews with probands, consultands and their family members. There were six different genetic cond..View full abstract
We thank the individuals who agreed to be involved in this study, the Australian Research Council for funding this project and the Murdoch Childrens Research Institute and Genetic Health Services Victoria for their ongoing support.