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家庭医学、“La Herencia”和乳腺癌;理解预测遗传学在古巴的(不)连续性。

Family medicine, 'La Herencia' and breast cancer; understanding the (dis)continuities of predictive genetics in Cuba.

机构信息

Anthropology Department, University College London, UK.

出版信息

Soc Sci Med. 2011 Jun;72(11):1784-92. doi: 10.1016/j.socscimed.2010.09.053. Epub 2010 Nov 24.

Abstract

Building on social science research examining the relationship between genetic knowledge, identity and the family this paper takes the cultural context of Cuba as a site for critical ethnographic engagement. The paper makes use of research working with a range of Cuban public and genetic professionals as part of a collaborative research project exploring the social and cultural context of health beliefs about breast cancer. It illuminates the contrasting ways in which genomic knowledge linked to an increased risk of breast cancer is perceived, communicated, and acted upon. It is argued that the particular meaning and significance of genetic risk linked to breast cancer in this context must be examined in relation to long standing institutional practices relating to public health care provision. The focus on 'the family' in the provision of Cuban health provides a particularly viable foundation for the expansion of what is described as 'community genetics', including the collation of family history details for common complex diseases such as breast cancer. Nevertheless specific public perceptions of risk related to breast cancer and the difficulties of discussing a diagnosis of cancer openly in the family point to the very specific challenges for the translation and application of predictive interventions in Cuba. In summary the dynamic interrelationship between public health, perceptions of risk or health beliefs about the causes of the disease and attitudes towards cancer diagnosis within the family point to both continuities and discontinuities in the way that genomic interventions linked to breast cancer are unfolding as part of a dynamic yet still ostensibly socialist project of health care in Cuba.

摘要

本文以古巴的文化背景为批判民族志的切入点,借鉴了考察基因知识、身份认同和家庭之间关系的社会科学研究,对其展开论述。本文利用在古巴公共领域和遗传专业人士中进行的一系列研究,作为一个探索健康信念与乳腺癌的社会和文化背景的合作研究项目的一部分。本文阐明了与乳腺癌风险增加相关的基因组知识被感知、交流和应用的截然不同方式。本文认为,必须参照长期以来与公共医疗服务提供相关的制度实践,来检验与乳腺癌相关的遗传风险的特定意义和重要性。在古巴,“家庭”在提供医疗服务方面发挥着核心作用,这为扩展所谓的“社区遗传学”提供了一个特别可行的基础,包括收集乳腺癌等常见复杂疾病的家族病史细节。然而,公众对乳腺癌风险的具体看法,以及在家庭中公开讨论癌症诊断的困难,都表明在古巴,预测性干预措施的转化和应用面临着非常具体的挑战。总之,公共卫生、对疾病原因的风险感知或健康信念以及对家庭中癌症诊断的态度之间的动态相互关系,既突显了与乳腺癌相关的基因组干预措施作为古巴动态但仍明显的社会主义医疗保健项目的一部分展开的连续性和非连续性。

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