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J Am Med Inform Assoc. 2018 Oct 1;25(10):1402-1406. doi: 10.1093/jamia/ocy071.

Using mobile location data in biomedical research while preserving privacy.

Author information

1
Clinical Epilepsy Section, NINDS, NIH.
2
Epilepsy Division, Beth Israel Deaconess Medical Center.
3
Department of Neurology, Steward Health Care.
4
Department of Emergency Medicine, Beth Israel Deaconess Medical Center.
5
Combined NeuroScience IRB, Office of Clinical Director, NINDS, NIH.
6
Intramural Research Program, National Institute on Drug Abuse, NIH.
7
Section on Research Ethics, Department of Bioethics, NIH.
8
SeizureTracker LLC.

Abstract

Location data are becoming easier to obtain and are now bundled with other metadata in a variety of biomedical research applications. At the same time, the level of sophistication required to protect patient privacy is also increasing. In this article, we provide guidance for institutional review boards (IRBs) to make informed decisions about privacy protections in protocols involving location data. We provide an overview of some of the major categories of technical algorithms and medical-legal tools at the disposal of investigators, as well as the shortcomings of each. Although there is no "one size fits all" approach to privacy protection, this article attempts to describe a set of practical considerations that can be used by investigators, journal editors, and IRBs.

PMID:
29889279
PMCID:
PMC6188531
[Available on 2019-06-07]
DOI:
10.1093/jamia/ocy071

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