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健康、快乐、理性:对东德遗传咨询的反思。

Healthy, happy, rational: reflections on genetic counselling in the GDR.

机构信息

Institute of the History of Medicine and Ethics in Medicine, Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, Hindenburgdamm 30, 12203 Berlin, Germany

出版信息

Med Humanit. 2023 Jun;49(2):236-247. doi: 10.1136/medhum-2022-012471. Epub 2023 Feb 3.

Abstract

The development of genetic counselling in the German Democratic Republic (GDR) was closely connected to a well-established system of prenatal care and a process that placed reproductive decisions in the hands of women. It was embedded in the pronatalist reproductive policy of the GDR and a narrative of medical and (socialist) humanistic progress. As in other countries at that time, it promoted the goal of avoiding the birth of children with disabilities and was hence based on ableist premises. In this paper, I focus on communicative aspects of genetic counselling, as it was established in the 1970s and 1980s in university and district clinics. Thus, on the one hand I explore the communication of genetic counselling to the public; and on the other, I study the communication processes in genetic counselling centres themselves. In contrast to the USA, where the 'genetic counsellor' became established as a professional identity in the 1970s, there was no distinct profession of 'genetic counsellor' in the GDR. Instead, counselling was practised by physicians or biologists with a special interest in human genetics. This resulted in a strong emphasis in these clinical encounters on diagnosis and technical solutions, as well as an educational impetus. I propose that an important goal of genetic counselling in the GDR was to generate a sense of 'rationality' in prospective parents. To achieve this, those advocating and giving counselling explicitly sought to distance this practice from the eugenic ideas of the past, and to dispel superstitious ideas of heredity and religious ideas of fate. In addition, they attempted to alleviate emotions such as fear and guilt. It was in that context that counselling physicians and biologists provided interpretations of genetic findings, risk figures and disease values. I show how different interests and experiences shaped these and how risk evaluations structured counsellor-counsellee communication.

摘要

前东德(东德)的遗传咨询发展与完善的产前保健系统以及将生殖决策置于女性手中的过程密切相关。它是东德的生殖优生政策以及医疗和(社会主义)人文进步叙事的一部分。与当时其他国家一样,它促进了避免生育残疾儿童的目标,因此基于残疾歧视的前提。在本文中,我将重点介绍 20 世纪 70 年代和 80 年代在大学和地区诊所建立的遗传咨询的交流方面。因此,一方面,我探讨了遗传咨询向公众的传播;另一方面,我研究了遗传咨询中心本身的交流过程。与美国不同,“遗传咨询师”在 20 世纪 70 年代确立了专业身份,而在东德,并没有明确的“遗传咨询师”职业。相反,咨询是由对人类遗传学特别感兴趣的医生或生物学家进行的。这导致在这些临床会议中,强烈强调诊断和技术解决方案,以及教育动力。我提出,东德遗传咨询的一个重要目标是在准父母中产生一种“理性”感。为了实现这一目标,倡导和提供咨询的人明确试图将这种做法与过去的优生学思想区分开来,并消除对遗传的迷信观念和对命运的宗教观念。此外,他们试图减轻恐惧和内疚等情绪。正是在这种背景下,咨询医生和生物学家对遗传发现、风险数字和疾病价值进行了解释。我展示了不同的利益和经验如何塑造了这些观点,以及风险评估如何构建咨询师与被咨询者之间的沟通。

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