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A case-note review of continued pregnancies found to be at a high risk of Huntington's disease: considerations for clinical practice.


ABSTRACT: Huntington's disease (HD) is a severe neurodegenerative condition that impacts the whole family. Prenatal diagnosis by direct or exclusion testing is available for couples at risk of transmitting HD to their children. An ethical problem can arise after prenatal diagnosis for HD if a known 'high risk' pregnancy is continued to term: international guidelines emphasise that this situation should be avoided where possible, as it removes the resulting child's future right to make an informed, autonomous decision about predictive testing. The UK Huntington's Disease Predictive Testing Consortium recorded 21 pregnancies that were tested, identified as high-risk and then continued. In this qualitative study, health professionals reviewed the case notes of 15 of these pregnancies. This analysis gen

SUBMITTER: Wadrup F 

PROVIDER: S-EPMC6777622 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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