'Science is really needed - that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden

被引:75
作者
Hoeyer, K [1 ]
机构
[1] Univ Copenhagen, Panum Inst, Dept Hlth Serv Res, DK-2200 Copenhagen N, Denmark
关键词
D O I
10.1080/1463677032000147199
中图分类号
Q81 [生物工程学(生物技术)]; Q93 [微生物学];
学科分类号
071005 ; 0836 ; 090102 ; 100705 ;
摘要
In Varsterbotten County in northern Sweden a start-up biotech company has recently gained all commercial rights to one of the worlds largest population based research biobanks. The biobank and the company have publicly emphasized that all donors have given their informed consent to participate, but within the academy it has become debated whether people have been adequately informed. Based on anthropological fieldwork it is shown that many people do not read the information provided. The data do not, however, suggest that donors themselves perceive a lack of information. This article endeavours to make meaningful the apparent lack of interest among donors in the information they are offered. It is argued that the donation of blood should be analysed in its social and historical context rather than as a response to rational assessment of information of research purposes. It implies a conceptualisation of agency more aware of the intersubjective nature of moral negotiation than usually implied in studies of informed consent.
引用
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页码:229 / 244
页数:16
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