Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease
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DOI: 10.1038/s41431-018-0308-y
Abstract: 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.… read more here.
Keywords: machado joseph; pre symptomatic; non engagement; family ... See more keywords