作者
Oscar A Zarate, Julia Green Brody, Phil Brown, Monica D Ramirez‐Andreotta, Laura Perovich, Jacob Matz
发表日期
2016/1
期刊
Hastings Center Report
卷号
46
期号
1
页码范围
36-45
简介
An individual's health, genetic, or environmental‐exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd‐sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched to each other. Reidentification (re‐ID), the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed‐consent documents. At the same time, re‐ID poses risks to researchers and indeed to the future of science, should re‐ID end up …
引用总数
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