Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics
Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics
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DOI：
10.1111/jlme.12258
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发表时间：
2015-06-01
影响因子：
2.1
通讯作者：
Rothstein, Mark A.
中科院分区：
文献类型：
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作者：
Rothstein, Mark A.
我首先要说的是，我不是大数据方面的专家。我甚至不是小数据方面的专家。像你们中的许多人一样，我是一个教授和撰写研究伦理的人，包括隐私、自主和知情同意。每当我听到一种新的研究方法是如此令人兴奋和如此有前途时，我就会感到担忧，以至于我们应该把自1947年《纽伦堡法典》以来塑造研究伦理学世界的伦理原则和规则放在一边。我想起了理论物理学家、原子弹之父J·罗伯特·奥本海默(J.Robert Oppenheimer)的那句话：“当你看到一些在技术上是甜蜜的东西时，你会去做，只有在你取得了技术上的成功后，你才会争论该怎么做。”1我希望我们不要落入这样的陷阱，认为任何新的信息技术都值得在健康研究中使用，而不考虑进行研究的伦理问题或更大的影响。在本文中，我将涉及以下问题：(1)传统研究法规是否应适用于大数据健康研究；(2)大数据健康研究中隐私与自主权之间的关系；(3)知情同意在大数据健康研究中的作用。
Let me say at the outset that I am not an expert on Big Data. I am not even an expert on Little Data. I am, like many of you, someone who teaches and writes about research ethics, including privacy, autonomy, and informed consent. I am someone who is concerned whenever I hear that a new research method is so exciting and so promising that we ought to set aside the ethical principles and rules that have shaped the world of research ethics since the Nuremberg Code in 1947. I am reminded of the statement of J. Robert Oppenheimer, theoretical physicist and father of the atom bomb:“When you see something that is technically sweet, you go ahead and do it and you argue about what to do about it only after you have had your technical success.” 1 I hope we do not fall into the trap of believing that any new information technology is worth using in health research regardless of the ethical issues in performing the research or the larger implications. In this article, I will cover the following issues:(1) whether traditional research regulations should apply to Big Data health research;(2) the relationship between privacy and autonomy in Big Data health research; and (3) the role of informed consent in Big Data health research.