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      Privacy in the age of medical big data

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      Nature Medicine
      Springer Nature

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          Abstract

          Big data has become the ubiquitous watch word of medical innovation. The rapid development of machine-learning techniques and artificial intelligence in particular has promised to revolutionize medical practice from the allocation of resources to the diagnosis of complex diseases. But with big data comes big risks and challenges, among them significant questions about patient privacy. Here, we outline the legal and ethical challenges big data brings to patient privacy. We discuss, among other topics, how best to conceive of health privacy; the importance of equity, consent, and patient governance in data collection; discrimination in data uses; and how to handle data breaches. We close by sketching possible ways forward for the regulatory system.

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          Most cited references29

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          The Algorithmic Foundations of Differential Privacy

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            Identifying personal genomes by surname inference.

            Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.
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              Achieving a nationwide learning health system.

              We outline the fundamental properties of a highly participatory rapid learning system that can be developed in part from meaningful use of electronic health records (EHRs). Future widespread adoption of EHRs will make increasing amounts of medical information available in computable form. Secured and trusted use of these data, beyond their original purpose of supporting the health care of individual patients, can speed the progression of knowledge from the laboratory bench to the patient's bedside and provide a cornerstone for health care reform.
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                Author and article information

                Journal
                Nature Medicine
                Nat Med
                Springer Nature
                1078-8956
                1546-170X
                January 2019
                January 7 2019
                January 2019
                : 25
                : 1
                : 37-43
                Article
                10.1038/s41591-018-0272-7
                6376961
                30617331
                a6a5e044-4836-466a-8c26-ebbd3f6c3b86
                © 2019

                http://www.springer.com/tdm

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