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Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease

This paper reports accounts from people at-risk for, or affected by, Machado-Joseph disease, and their family members, about their decisions not to seek pre-symptomatic testing, therefore remaining (for the time) uninformed about their genetic status. We draw on individual and family semi-structured...

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Detalhes bibliográficos
Publicado no:Eur J Hum Genet
Main Authors: Mendes, Álvaro, Paneque, Milena, Clarke, Angus, Sequeiros, Jorge
Formato: Artigo
Idioma:Inglês
Publicado em: Springer International Publishing 2018
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC6460576/
https://ncbi.nlm.nih.gov/pubmed/30573801
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1038/s41431-018-0308-y
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