Geissler P Wenzel
Institute of Social Anthropology, University of Oslo, London ; London School of Hygiene and Tropical Medicine, London. Email:
J Cult Econ. 2011 Feb;4(1):45-64. doi: 10.1080/17530350.2011.535335.
Based upon Kenyan ethnography, this article examines the gap between the bioethics aversion to value transfers in clinical trials, and research participants' and researchers' expectations of these. This article focuses upon so-called 'transport reimbursement' (TR): monetary payments to participants that are framed as mere refund of transport expenses, but which are of considerable value to recipients. The interest in this case lies not so much in the unsurprising gap between regulatory norms and poor study subjects' lives, but in the way in which this discrepancy between bioethical discourse and materialities of survival is silenced. In spite of the general awareness that TR indeed is about the material value of research, about value calculation, and expectations of return, it is not publicly discussed as such - unless ironically, in jest, or in private. This double-blindness around 'reimbursement' has provoked discussions among ethicists and anthropologists, some of which propose that the work that generates scientific value should be recognised as labour and participants, accordingly, paid. Here, this paper argues that such a re-vision of trial participation as work rather than as a gift for the public good, risks abrogating the possibility of 'the public' that is not only a precondition of public medical science, but also its potential product. The supposedly radical solution of tearing away the veils of misrecognition that 'free' gifting ideology lays upon the realities of free labour, though analytically plausible, fails to recognise the utopian openings within clinical trial transactions that point beyond the present - towards larger forms of social association, and towards future alignments of scientific possibilities and human lives.
基于肯尼亚的人种志研究,本文考察了生物伦理学对临床试验中价值转移的反感与研究参与者及研究者对此的期望之间的差距。本文聚焦于所谓的“交通补贴”(TR):向参与者支付的款项,表面上只是交通费用的退还,但对接受者来说价值不菲。本案的关注点与其说是监管规范与贫困研究对象生活之间不出所料的差距,不如说是生物伦理话语与生存物质条件之间的这种差异被忽视的方式。尽管人们普遍意识到TR实际上关乎研究的物质价值、价值计算和回报期望,但它并未被公开讨论——除非具有讽刺意味地、开玩笑地或私下里讨论。围绕“补贴”的这种双重盲目引发了伦理学家和人类学家之间的讨论,其中一些人提议,产生科学价值的工作应被视为劳动,相应地,应为参与者支付报酬。在此,本文认为,将试验参与重新定义为工作而非为公共利益做出的贡献,可能会消除“公众”存在的可能性,而公众不仅是公共医学科学的前提条件,也是其潜在产物。尽管从分析角度看,撕开“免费”馈赠意识形态加诸于无偿劳动现实之上的误认面纱这一激进解决方案似乎合理,但它没有认识到临床试验交易中指向超越当下的乌托邦式开端——指向更大形式的社会关联,以及科学可能性与人类生活在未来的契合。