Socio-cultural effects of biomedicalisation - an example of LCHAD deficiency in the Kashubian population

Q1 Social Sciences Ethnologia Europaea Pub Date : 2022-03-18 DOI:10.16995/ee.1413
A. Kwaśniewska
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Abstract

Biomedicalisation is related to the development of medicine, especially in the area of newtechnologies. A prominent role in this context is played by genetic research. One of the diseaseswhich have been identified as result of the development of genetic research is the LCHADdeficiency. This disease quite commonly occurs in Europe, in the countries of the Baltic Sea basin,and especially in Poland – among the Kashubians. I analyse the socio-cultural effects of thisdisease, popularly known as the “Kashubian gene”, based on the data gathered duringethnographic research conducted with this ethno-regional group between 2016-2017, as well ason the analysis of press and internet publications. I show that biomedicalisation is a complex,multidimensional, and ambiguous process. On the one hand, screening tests save lives byenabling early detection of the disease and its treatment. On the other hand, the effects ofbiomedicalisation extend beyond the original goal of diagnosis and treatment. Biomedicalisationaffects the management of genetic risk and is an element of control over one’s own destiny. Iargue that by identifying the LCHAD deficiency in the Kashubian population, genetics affectsthe image, stereotype, relations and social behaviour of this group. Genetic disease becomes akind of a stigma and a spoiled identity. I show that Kashubians do not yield to the effects ofbiomedicalisation, pointing out the stigmatising character of the term “Kashubian gene”, and alsochallenging the socio-cultural interpretation of the cause of the frequent occurrence of this disease,as given by the medical professionals (who point to endogamy and insufficient influx ofoutsiders).
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生物医学化的社会文化影响——以卡舒比亚人口LCHAD缺乏为例
生物医疗与医学的发展有关,尤其是在新技术领域。基因研究在这方面发挥了重要作用。LCHAD缺乏症是遗传研究发展的结果之一。这种疾病在欧洲、波罗的海流域的国家非常常见,尤其是在波兰——卡舒比人中。我分析了这种疾病的社会文化影响,通常被称为“卡舒比亚基因”,基于2016-2017年间与该民族地区群体进行的地理学研究中收集的数据,以及对新闻和互联网出版物的分析。我表明,生物医学化是一个复杂、多维和模糊的过程。一方面,筛查可以通过早期发现疾病并进行治疗来挽救生命。另一方面,生物医疗的效果超出了最初的诊断和治疗目标。生物医疗影响遗传风险的管理,是控制自己命运的一个因素。我认为,通过识别卡舒比亚人群中的LCHAD缺陷,遗传学影响了该群体的形象、刻板印象、关系和社会行为。遗传性疾病变成了一种耻辱和被破坏的身份。我表明,卡舒比亚人不会屈服于生物医学的影响,指出了“卡舒比亚基因”一词的污名化特征,也挑战了医学专业人员对这种疾病频繁发生原因的社会文化解释(他们指出了内通婚和外来人口流入不足)。
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来源期刊
Ethnologia Europaea
Ethnologia Europaea Social Sciences-Cultural Studies
CiteScore
1.80
自引率
0.00%
发文量
6
审稿时长
52 weeks
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