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Camb Q Healthc Ethics. 2016 Oct;25(4):583-99. doi: 10.1017/S0963180116000323.

Giving Voice to Consciousness.


In the 2015 David Kopf Lecture on Neuroethics of the Society for Neuroscience, Dr. Joseph Fins presents his work on neuroethics and disorders of consciousness through the experience of Maggie and Nancy Worthen, a young woman who sustained a severe brain injury and her mother who cared for her. The central protagonists in his book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (Cambridge University Press, 2015), their experience is emblematic of the challenges faced by families touched by severe brain injury and the possibility for improved diagnosis and treatment offered by progress in neuroscience. By telling their story, and those of other families interviewed as part of the research for Rights Come to Mind, Fins calls for improved care for this population arguing that this is both an access to care issue and a civil and disability rights issue worthy of greater societal attention.


brain injury; civil rights; deep brain stimulation; disability rights; disorders of consciousness; minimally conscious state; narrative ethics; neuroethics; neuroimaging; vegetative state

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