Enck Paul, Goebel-Stengel Miriam, Rieß Olaf, Hübener-Schmid Jeannette, Kagan Karl Oliver, Nieß Andreas Michael, Tümmers Henning, Wiesing Urban, Zipfel Stephan, Stengel Andreas
Innere Medizin VI, Psychosomatische Medizin und Psychotherapie, Universitätsklinikum Tübingen, Osianderstr. 5, 72076, Tübingen, Deutschland.
Klinik für Innere Medizin, Helios Klinik Rottweil, Rottweil, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2021 Oct;64(10):1298-1306. doi: 10.1007/s00103-021-03400-2. Epub 2021 Sep 15.
The worldwide development of twin cohorts began after World War II. These cohorts now include around 1.5 million twins, and more than 2748 twin studies have been published between 1950 and 2012. Each year, the number of twin publications increases by another 500 to 1000. The underrepresentation of German twin studies cannot be solely explained by the abuse of medical research under National Socialism. Developing and expanding large twin cohorts is a challenge in terms of both ethics and data protection. However, twin cohorts enable long-term and real-time research on many medical issues and contribute to answer the question of predisposition or environment as possible disease triggers - even after the sequencing of the human genome.There are currently two German twin cohorts: the biomedical cohort HealthTwiSt, with around 1500 pairs of twins, and TwinLife, a sociological-psychological cohort with around 4000 pairs of twins. There are also disease-specific cohorts. The TwinHealth Consortium in the Faculty of Medicine at the University of Tübingen was established in 2016 with the aim of enabling open-ended and sustainable twin research in Tübingen to answer various scientific questions.With the help of systematic literature research and medical history, this article gives an overview of the worldwide development of twin studies and databases over the last 100 years. The example of the Tübingen TwinHealth Initiative illuminates the structure of a twin cohort and its legal, ethical, and data protection aspects.
双胞胎队列的全球发展始于第二次世界大战之后。这些队列目前包含约150万对双胞胎,1950年至2012年间发表了超过2748项双胞胎研究。每年,双胞胎研究的发表数量还会增加500至1000项。德国双胞胎研究占比不足不能仅用纳粹时期医学研究被滥用这一原因来解释。在伦理和数据保护方面,开发和扩大大型双胞胎队列是一项挑战。然而,双胞胎队列能够对许多医学问题进行长期和实时研究,并有助于回答易感性或环境是否可能作为疾病触发因素的问题——即使在人类基因组测序之后也是如此。目前有两个德国双胞胎队列:生物医学队列HealthTwiSt,约有1500对双胞胎;以及TwinLife,一个社会学 - 心理学队列,约有4000对双胞胎。还有针对特定疾病的队列。图宾根大学医学院的双胞胎健康联盟于2016年成立,旨在使图宾根能够开展开放式和可持续的双胞胎研究,以回答各种科学问题。借助系统的文献研究和病史资料,本文概述了过去100年全球双胞胎研究和数据库的发展情况。图宾根双胞胎健康倡议的例子阐明了双胞胎队列的结构及其法律、伦理和数据保护方面的情况。