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The Documentation of Consent and Disclosure of Neurogenetic Testing Outside Clinical Genetics

By C. Lo, J. Martindale, M. Hadjivassiliou, P. Martin, A. DAlton, O. Bandmann

Neurogenetics (2014)

Neurogenetic tests are increasingly requested by
clinical neurologists without any formal training in clinical
genetics. The aim of our study was to assess the documentation
of consent and disclosure of genetic test results in a large
regional clinical neuroscience centre. Documentation of some
form of consent was evident in only 26/132 (20 %) of tests.
However, the higher proportion of both positive and negative
results disclosed (50/132, 38 %) suggest that the former figure
may underestimate actual rates of undocumented consent
within the clinical setting. Our findings highlight the need
for a review of established practices surrounding consent in
clinical neurology.

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