民主如何做到知情同意--以互联网和生物伦理为例

How Democracy Can Inform Consent:Cases of the Internet and Bioethics

传统的知情同意概念似乎很难甚至不可能应用于生物样本库、大数据或转基因生物等新技术,这些技术可能会潜在地影响到大量的人,而且后果和风险是无法确定甚至无法预见的。随着个人信息在数字平台上被盗用和货币化,这一原则也面临压力。随着时间的推移,知情同意在很大程度上已沦为空洞地对形式主义法律协议的赞同。为了解决当前知情同意规范的无效,本文建议需要一个“结构性不公正”的概念(这个考虑了权力和财产关系不平等的独特解释将在文中详细说明)。为了保护和加强人们的自由,必须超越传统的应用伦理学,引入民主理论和社会哲学的观点。本文试图展示“全影响原则”(all-affected principle)的应用,民主参与、陪审和代议制的新形式如何有助于构建更精确的知情同意原则。集体同意具有重要作用,知情同意只有在民主决策的强化形式中才能成功增强个人的能动性。

Traditional conceptions of informed consent seem difficult or even impossible to apply to new technologies like biobanks,big data,or GMOs,where vast numbers of people are potentially affected,and where consequences and risks are indeterminate or even unforeseeable.Likewise,the principle has come under strain with the appropriation and monetization of personal information on digital platforms.Over time,it has largely been reduced to bare assent to formalistic legal agreements.To address the current ineffectiveness of the norm of informed consent,I suggest that we need a notion of structural injustice(on a distinctive interpretation,elaborated here,which takes account of unequal power and property relations).I then argue that in order to protect and enhance people’s freedom,we have to go beyond traditional applied ethics and introduce perspectives from democratic theory and social philosophy.I attempt to show how applications of the"all-affected principle",together with new forms of democratic participation,deliberation,and representation can helpfully frame the narrower principle of informed consent.There is an important role for what we could call collective consent,and informed consent can only succeed in increasing individual agency if it is situated within enhanced forms of democratic decision-making.