Abstract In this article we discuss the development of a practice of screening, preventive treatment, and presymptomatic testing for individuals at risk of Familial Adenomatous Polyposis (FAP), a specific hereditary predisposition for colon cancer. We describe this development as a process of co-evolution, showing how this practice has been gradually taking shape in a new network of actors, routines, rules, institutions and technologies. We further argue that, looking at the emergence and transformation of this practice, we can distinguish two different regimes: a regime of prevention and a regime of self-determination. In each of these regimes the autonomy of patients and individuals at risk is shaped in a different way, that is, through a different complex of ideals, procedures, institutions, technologies, and routines. In our view, the interference between these two regimes is an important characteristic of the emergent new genetics and is reflected in the growing debate about non-directivity in genetic counselling. However, as our argument implies, when facing the challenges of the new genetics we should not restrict the debate to the quality and ethics of counselling, but extend our view to the whole complex of elements and activities which shapes individual autonomy in the context of different regimes.

中文翻译：

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癌症遗传学及其“自主的不同面貌”

摘要 在本文中，我们讨论了对有家族性腺瘤性息肉病 (FAP) 风险个体的筛查、预防性治疗和症状前检测实践的发展，FAP 是一种特定的结肠癌遗传易感性。我们将这种发展描述为一个共同进化的过程，展示了这种实践是如何在一个由参与者、惯例、规则、制度和技术组成的新网络中逐渐形成的。我们进一步认为，从这种做法的出现和转变来看，我们可以区分两种不同的制度：预防制度和自决制度。在每一种制度中，患者和处于危险中的个人的自主权都以不同的方式塑造，即通过不同的理想、程序、制度、技术和惯例的复合体。在我们看来，这两种机制之间的干扰是新兴的新遗传学的一个重要特征，这反映在关于遗传咨询非方向性的日益增长的辩论中。然而，正如我们的论点所暗示的那样，当面对新遗传学的挑战时，我们不应将辩论限制在咨询的质量和伦理上，而应将我们的观点扩展到在不同背景下塑造个体自主性的整个要素和活动。制度。