Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
J Med Ethics. 2012 Sep;38(9):519-24. doi: 10.1136/medethics-2011-100055. Epub 2012 Mar 8.
Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed.
预测性基因检测现在通常提供给有遗传疾病风险的无症状成年人。然而，对有成年发病风险但目前没有治疗或预防干预措施的未成年人进行检测，引起了更大的争议，并激发了一场长达二十年的辩论。本综述旨在提供详细的纵向分析，并通过考察当前辩论的现状和未来前景来得出结论。共确定了 1990 年至 2010 年 12 月期间发表的 53 篇相关理论论文，并采用解释性内容分析对这些论文中的离散论点进行分类。从这次综述中得出了一些新的结论。虽然辩论的最初声音是反对检测，而且他们的论点多年来一直保持不变，但最初零星出现的支持检测的论点最近也越来越有影响力。双方的大多数论点都是未经检验的可检验的经验性主张，而不是抽象的伦理或哲学立场。因此，争议不在于是否应允许未成年人接受预测性基因检测，而在于是否应评估这些关于检测的相对益处或危害的经验性主张。
