Journal article

Family communication following a diagnosis of myotonic dystrophy: To tell or not to tell?

Shelby Taylor, Miriam Rodrigues, Gemma Poke, Samantha Wake, Alison McEwen

JOURNAL OF GENETIC COUNSELING | WILEY | Published : 2019

Abstract

Family communication about genetic information enables informed medical and reproductive decision-making. The literature suggests that a significant proportion of genetically at-risk family members remain uninformed about genetic risk information as a result of non-disclosure. This study explored the experiences of New Zealand families communicating about a diagnosis of type 1 myotonic dystrophy (DM1). Eligible individuals were identified and recruited from the New Zealand (NZ) MD Prev study, a nationwide study which aimed to determine the prevalence, impact, and costs of genetic muscle disorders across the lifespan. Twelve qualitative semi-structured interviews were conducted with 17 partic..

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