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基因化:塞浦路斯范式。

Geneticization: the Cyprus paradigm.

作者信息

Hoedemaekers R, ten Have H

机构信息

Catholic University of Nijmegen, The Netherlands.

出版信息

J Med Philos. 1998 Jun;23(3):274-87. doi: 10.1076/jmep.23.3.274.2585.

DOI:10.1076/jmep.23.3.274.2585
PMID:9736189
Abstract

Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for beta-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of beta-thalassaemia, and have generated a number of unresolved incongruities.

摘要

基因化是一个广义术语,指的是几个相关过程,比如使用疾病解释的基因模型的传播趋势、遗传学在医学实践中的日益增长的影响,以及个人和社会对疾病的生殖、预防和控制态度的缓慢转变。这些过程可以在塞浦路斯、英国和加拿大关于β地中海贫血的预防性基因筛查和咨询项目的医学文献中得到证明。健康专业人员很快理解并倡导了新的基因和诊断技术的预防可能性,他们的教育策略形成了一个社会控制网络,这与所谓的自愿决策过程和自由选择形成了鲜明对比。基因诊断技术已导致β地中海贫血的控制和管理发生了相当大的变化,并产生了一些未解决的不一致之处。

相似文献

1
Geneticization: the Cyprus paradigm.基因化:塞浦路斯范式。
J Med Philos. 1998 Jun;23(3):274-87. doi: 10.1076/jmep.23.3.274.2585.
2
Genetic screening and ethics: European perspectives.
J Med Philos. 1998 Jun;23(3):255-73. doi: 10.1076/jmep.23.3.255.2580.
3
Problems in the control of genetic disorders.遗传性疾病的控制问题。
Biomed Sci. 1990 Jan;1(1):3-17.
4
[Monitoring pregnant patients from risk countries with sickle cell disease and thalassemia. Clinical aspects, screening and prenatal diagnosis].[对来自风险国家的镰状细胞病和地中海贫血孕妇进行监测。临床情况、筛查及产前诊断]
Geburtshilfe Frauenheilkd. 1993 Apr;53(4):215-21. doi: 10.1055/s-2007-1023668.
5
American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.美国临床肿瘤学会政策声明更新:癌症易感性基因检测
J Clin Oncol. 2003 Jun 15;21(12):2397-406. doi: 10.1200/JCO.2003.03.189. Epub 2003 Apr 11.
6
Evaluation of the national health policy of thalassaemia screening in the Islamic Republic of Iran.伊朗伊斯兰共和国地中海贫血筛查国家卫生政策评估
East Mediterr Health J. 2005 May;11(3):308-18.
7
Prevention of homozygous beta thalassemia by premarital screening and prenatal diagnosis in India.印度通过婚前筛查和产前诊断预防纯合子β地中海贫血
Prenat Diagn. 2009 Jan;29(1):83-8. doi: 10.1002/pd.2176.
8
Premarital screening for beta-thalassaemia in Southern Iran: options for improving the programme.伊朗南部β地中海贫血的婚前筛查:改进该项目的选择
J Med Screen. 2007;14(2):62-6. doi: 10.1258/096914107781261882.
9
Sociocultural challenges of beta-thalassaemia major birth in carriers of beta-thalassaemia in Iran.伊朗β-地中海贫血携带者中重型β-地中海贫血患儿出生所面临的社会文化挑战。
J Med Screen. 2012 Sep;19(3):109-11. doi: 10.1258/jms.2012.012038.
10
The Cyprus Thalassemia Control Program.塞浦路斯地中海贫血控制项目
Birth Defects Orig Artic Ser. 1988;23(5B):417-32.

引用本文的文献

1
The Geneticization of Education and Its Bioethical Implications.教育的基因化及其生物伦理意义。
Camb Q Healthc Ethics. 2024 Nov 7:1-17. doi: 10.1017/S096318012400046X.
2
Can Cyprus Afford Luspatercept? A Budget Impact Analysis of the Reimbursement of Luspatercept for the Management of Thalassaemia in Cyprus.塞浦路斯能否负担得起罗特西普?塞浦路斯罗特西普用于地中海贫血管理报销的预算影响分析。
Pharmacoecon Open. 2024 May;8(3):471-480. doi: 10.1007/s41669-024-00482-x. Epub 2024 Apr 4.
3
Ethics of Reproductive Genetic Carrier Screening: From the Clinic to the Population.
生殖遗传携带者筛查的伦理:从临床到人群
Public Health Ethics. 2021 Jun 14;14(2):202-217. doi: 10.1093/phe/phab017. eCollection 2021 Jul.
4
Ethical considerations in gene selection for reproductive carrier screening.用于生殖载体筛查的基因选择中的伦理考虑因素。
Hum Genet. 2022 May;141(5):1003-1012. doi: 10.1007/s00439-021-02341-9. Epub 2021 Aug 23.
5
Reproductive carrier screening: responding to the eugenics critique.生殖载体筛查:回应优生学批判。
J Med Ethics. 2022 Dec;48(12):1060-1067. doi: 10.1136/medethics-2021-107343. Epub 2021 Jul 9.
6
Carrier screening for beta-thalassaemia: a review of international practice.β-地中海贫血症携带者筛查:国际实践综述。
Eur J Hum Genet. 2010 Oct;18(10):1077-83. doi: 10.1038/ejhg.2010.90. Epub 2010 Jun 23.
7
Geneticization and bioethics: advancing debate and research.基因化与生物伦理学:推动辩论与研究
Med Health Care Philos. 2007 Dec;10(4):417-31. doi: 10.1007/s11019-007-9088-9. Epub 2007 Aug 18.
8
Genetic tools, Kuhnean theoretical shift and the geneticization process.
Med Health Care Philos. 2006;9(1):3-12. doi: 10.1007/s11019-005-8317-3.
9
The right not to know: an autonomy based approach.不知情权:一种基于自主性的方法。
J Med Ethics. 2004 Oct;30(5):435-9; discussion 439-40. doi: 10.1136/jme.2002.001578.
10
Nondirectiveness and its lay interpretations: the effect of counseling style, ethnicity and culture on attitudes towards genetic counseling among Jewish and Bedouin respondents in Israel.非指导性及其通俗解释:咨询风格、种族和文化对以色列犹太人和贝都因受访者对遗传咨询态度的影响。
J Genet Couns. 2003 Aug;12(4):313-32. doi: 10.1023/a:1023901005451.