Ross Lainie Friedman
University of Chicago, USA.
J Law Med Ethics. 2006 Winter;34(4):753-64. doi: 10.1111/j.1748-720X.2006.00096.x.
The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue.
在普通人群中进行携带者检测的主要价值在于确定生育风险。在本论文中，我探讨了在学校环境中开展携带者筛查项目的做法。虽然数据表明高中筛查项目能够实现高参与率，但我认为这可能反映出对风险、益处、替代方案以及不知情权缺乏充分理解。这也可能反映出群体检测中固有的强制性，尤其是对于容易受到同伴压力影响的青少年。当某种疾病基于种族、民族或宗教对特定群体具有偏好时，学校中的携带者筛查问题就会变得更加复杂。我研究了世界各地旨在检测高中生泰 - 萨克斯病和囊性纤维化携带者状态的项目。我认为携带者项目的设计应尽量减少污名化，并允许个人拒绝检测。强制性的学校环境无法做到这一点。相反，我得出结论，筛查项目应设计成吸引年轻人而非青少年参与更具自愿性的场所。
