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隐私、伦理与数据获取:脆弱家庭挑战的案例研究

Privacy, Ethics, and Data Access: A Case Study of the Fragile Families Challenge.

作者信息

Lundberg Ian, Narayanan Arvind, Levy Karen, Salganik Matthew J

机构信息

Princeton University, Princeton, NJ, USA.

Cornell University, Ithaca, NY, USA.

出版信息

Socius. 2019 Jan-Dec;5. doi: 10.1177/2378023118813023. Epub 2019 Sep 10.

Abstract

Stewards of social data face a fundamental tension. On one hand, they want to make their data accessible to as many researchers as possible to facilitate new discoveries. At the same time, they want to restrict access to their data as much as possible to protect the people represented in the data. In this article, we provide a case study addressing this common tension in an uncommon setting: the Fragile Families Challenge, a scientific mass collaboration designed to yield insights that could improve the lives of disadvantaged children in the United States. We describe our process of threat modeling, threat mitigation, and third-party guidance. We also describe the ethical principles that formed the basis of our process. We are open about our process and the trade-offs we made in the hope that others can improve on what we have done.

摘要

社会数据管理者面临着一个基本的矛盾。一方面,他们希望让尽可能多的研究人员能够获取他们的数据,以促进新的发现。与此同时,他们又希望尽可能地限制对其数据的访问,以保护数据中所涉及的人员。在本文中,我们提供了一个案例研究,该研究在一个不同寻常的背景下解决了这一常见矛盾:脆弱家庭挑战,这是一项大规模科学合作项目,旨在产生能够改善美国弱势儿童生活的见解。我们描述了我们的威胁建模、威胁缓解和第三方指导过程。我们还描述了构成我们这一过程基础的伦理原则。我们公开我们的过程以及我们所做出的权衡,希望其他人能够改进我们所做的工作。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5bfd/10284584/b4337ef56bc6/nihms-1847715-f0016.jpg

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