Ethics Unit in the University Hospital in Bern, Switzerland University of Amsterdam.
Bioethics. 2011 Jul;25(6):342-50. doi: 10.1111/j.1467-8519.2009.01795.x. Epub 2009 Dec 27.
Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as 'absurd'. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. Camus' writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay 'The Myth of Sisyphus' (1942), and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach.
预测性基因检测可能会使受检者面临他们以前从未经历过的困难生活状况，这些生活状况可能被解读为“荒谬的”。本文通过一个预测性测试情境的案例研究，展示了一位女性在决定是否接受测试过程中的观点，以及她在与异化感作斗争。为了解释她的经历，我们参考了法国哲学家阿尔贝·加缪（Albert Camus）提出的荒谬概念。当患者谈论自己的身体和疾病经历时，加缪关于荒谬的著作似乎与他们的故事产生了共鸣。在本文中，我们借鉴了加缪的哲学随笔《西西弗斯的神话》（1942），并将西西弗斯的荒谬经历与受访者的故事进行了比较。这种比较开辟了一个伦理反思的领域。我们表明，加缪的荒谬概念为理解患者处境的脆弱性提供了一种新的、有前途的方法，特别是在预测性测试领域。我们表明，受影响的人可能会通过帮助他们在不完全克服荒谬的情况下重构荒谬的叙述找到新的意义。最后，我们将得出我们叙事方法的一些规范性结论。
