The documentation of consent and disclosure of neurogenetic testing outside clinical genetics

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...

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Bibliographic Details
Published in:Neurogenetics 2014-03, Vol.15 (1), p.19-21
Main Authors: Lo, C., Martindale, J., Hadjivassiliou, M., Martin, P., Dalton, A., Bandmann, O.
Format: Article
Language:English
Subjects:
Biomedical and Life Sciences
Biomedicine
Disclosure
Documentation
Genetic testing
Genetic Testing - methods
Genetic Testing - standards
Human Genetics
Humans
Informed Consent
Molecular Medicine
Neurological disorders
Neurology - methods
Neurology - standards
Neurosciences
Physician-Patient Relations
Retrospective Studies
Short Communication
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Summary: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.
ISSN:1364-6745
1364-6753
DOI:10.1007/s10048-014-0391-3