Reporting consciousness in coma: media framing of neuro-scientific research, hope, and the response of families with relatives in vegetative and minimally conscious states

Abstract

This paper examines the public representation of, and family responses to, scientific studies into consciousness in coma-like states. We examine the publicity surrounding high-profile studies using functional Magnetic Resonance Imaging (fMRI) on ‘vegetative’ or ‘minimally conscious’ patients and compare this with family views. Our findings show how, with a few notable exceptions, the research was presented as an amazing breakthrough offering a potential ‘voice’ and choice for patients and hope and comfort for their families. We argue that such representations ignored key limitations, evoked unrealistic visions of recovery, and promoted very narrow representations of family reactions. The comparison between public representations of the science and responses from families with experience of this issue highlights the complex social/medical world into which neurotechnologies intervene, and points to the absence of a range of patient/family perspectives in public discourse. We conclude with suggestions for how those promoting the research, and the journalists reporting its implications, could act to ensure more responsible coverage and enhance public debate