Samuel Gabrielle, Kitzinger Jenny
Brunel University.
Cardiff University.
JOMEC J. 2013 Jun 1;3:10244. doi: 10.18573/j.2013.10244. eCollection 2013.
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.
本文探讨了关于处于类昏迷状态下的意识的科学研究在公众中的呈现方式以及家庭的反应。我们研究了围绕使用功能磁共振成像(fMRI)对“植物人”或“最低意识状态”患者进行的备受瞩目的研究的宣传情况,并将其与家庭观点进行比较。我们的研究结果表明,除了少数显著的例外情况,这些研究被呈现为一项惊人的突破,为患者提供了潜在的“声音”和选择,为其家人带来了希望和慰藉。我们认为,这种呈现方式忽略了关键的局限性,引发了不切实际 的康复愿景,并对家庭反应进行了非常片面的呈现。科学在公众中的呈现方式与有此经历的家庭的反应之间的比较,凸显了神经技术所介入的复杂社会/医学世界,并指出在公众话语中缺乏一系列患者/家庭的观点。我们最后提出了一些建议,关于那些推动该研究的人员以及报道其影响的记者如何采取行动,以确保更负责任的报道并加强公众辩论。