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Power to the People: Data Citizens in the Age of Precision Medicine. 人民的权力:精准医疗时代的数据公民。
Barbara J Evans

Twentieth-century bioethics celebrated individual autonomy but framed autonomy largely in terms of an individual's power to make decisions and act alone. The most pressing challenges of big data science in the twenty-first century can only be resolved through collective action and common purpose. This Article surveys some of these challenges and asks how common purpose can ever emerge on the present bioethical and regulatory landscape. The solution may lie in embracing a broader concept of autonomy that empowers individuals to protect their interests by exercising meaningful rights of data citizenship. This Article argues that twentieth-century bioethics was a paternalistic, top-down affair in which self-proclaimed ethics experts set standards to protect research subjects portrayed as autonomous yet too vulnerable and disorganized to protect themselves. The time may be ripe for BioEXIT, a popular uprising of regular people seeking a meaningful voice in establishing citizen-led ethical and privacy standards to advance big-data science while addressing the concerns people feel about the privacy of their health data.

20世纪的生物伦理学推崇个人的自主性,但将自主性主要定义为个人做出决定和单独行动的权力。21世纪大数据科学最紧迫的挑战只能通过集体行动和共同目标来解决。本文调查了其中的一些挑战,并询问如何在当前的生物伦理和监管环境中出现共同的目标。解决方案可能在于接受更广泛的自治概念,使个人能够通过行使有意义的数据公民权利来保护自己的利益。这篇文章认为,20世纪的生物伦理学是一种家长式的、自上而下的事务,在这种事务中,自称为伦理学专家的人制定了保护研究对象的标准,这些研究对象被描述为自主的,但却过于脆弱和混乱,无法保护自己。BioEXIT的时机可能已经成熟,这是一场普通民众的起义,他们寻求在建立公民主导的道德和隐私标准方面发出有意义的声音,以推进大数据科学,同时解决人们对其健康数据隐私的担忧。
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Vanderbilt journal of entertainment and technology law
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