BrainsCAN Publications
Acknowledging awareness: Informing families of individual research results for patients in the vegetative state
Document Type
Article
Publication Date
1-1-2015
Journal
Journal of Medical Ethics
First Page
534
Last Page
538
URL with Digital Object Identifier
10.1136/medethics-2014-102078
Abstract
Recent findings in cognitive neuroscience have revealed that some patients previously diagnosed as being in a vegetative state may retain some degree of covert awareness. However, it is unclear whether such findings should be disclosed to the families of these patients. Concerns about the preservation of scientific validity, reliability of results and potential harms associated with disclosure suggest that individual research results should be disclosed only under certain conditions. In thefollowing paper, we offer four criteria for the disclosure of individual research results. Because the results of functional neuroimaging studies to detect covert awareness in vegetative patients are scientifically valid, informative and reasonably reliable and have considerable potential benefit for the patient, researchers have an obligation to disclose such results to family members. Further work is needed to develop educational materials for families and to systematically study the impact of disclosure on the families themselves.