Skip to main content

Lund University Publications

LUND UNIVERSITY LIBRARIES

Shadow health records meet new data privacy laws

Price II, William Nicholson ; Spector-Bagdady, Kayte ; Minssen, Timo LU and Kaminski, Margot (2019) In Science 363(6426). p.448-450
Abstract
Large sets of health data can enable innovation and quality measurement but can also create technical challenges and privacy risks. When entities such as health plans and health care providers handle personal health information, they are often subject to data privacy regulation. But amid a flood of new forms of health data, some third parties have figured out ways to avoid some data privacy laws, developing what we call “shadow health records”—collections of health data outside the health system that provide detailed pictures of individual health—that allow both innovative research and commercial targeting despite data privacy rules. Now that space for regulatory arbitrage is changing. The long arms of Europe's new General Data Protection... (More)
Large sets of health data can enable innovation and quality measurement but can also create technical challenges and privacy risks. When entities such as health plans and health care providers handle personal health information, they are often subject to data privacy regulation. But amid a flood of new forms of health data, some third parties have figured out ways to avoid some data privacy laws, developing what we call “shadow health records”—collections of health data outside the health system that provide detailed pictures of individual health—that allow both innovative research and commercial targeting despite data privacy rules. Now that space for regulatory arbitrage is changing. The long arms of Europe's new General Data Protection Regulation (GDPR) and California's new Consumer Privacy Act (CCPA) will reach shadow health records in many companies. In this article, we lay out the contours of the GDPR's and CCPA's impact on shadow health records and health data more broadly, highlight critical remaining uncertainty, and call for increased clarity from lawmakers and industry on the use of such data for research. (Less)
Please use this url to cite or link to this publication:
author
; ; and
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Medical law, Medicinsk rätt
in
Science
volume
363
issue
6426
pages
3 pages
publisher
American Association for the Advancement of Science (AAAS)
external identifiers
  • pmid:30705168
  • scopus:85060786024
ISSN
0036-8075
DOI
10.1126/science.aav5133
language
English
LU publication?
no
id
405be416-2afd-42da-b7cb-c63b3168b81d
date added to LUP
2020-12-16 14:14:30
date last changed
2022-04-26 22:36:56
@article{405be416-2afd-42da-b7cb-c63b3168b81d,
  abstract     = {{Large sets of health data can enable innovation and quality measurement but can also create technical challenges and privacy risks. When entities such as health plans and health care providers handle personal health information, they are often subject to data privacy regulation. But amid a flood of new forms of health data, some third parties have figured out ways to avoid some data privacy laws, developing what we call “shadow health records”—collections of health data outside the health system that provide detailed pictures of individual health—that allow both innovative research and commercial targeting despite data privacy rules. Now that space for regulatory arbitrage is changing. The long arms of Europe's new General Data Protection Regulation (GDPR) and California's new Consumer Privacy Act (CCPA) will reach shadow health records in many companies. In this article, we lay out the contours of the GDPR's and CCPA's impact on shadow health records and health data more broadly, highlight critical remaining uncertainty, and call for increased clarity from lawmakers and industry on the use of such data for research.}},
  author       = {{Price II, William Nicholson and Spector-Bagdady, Kayte and Minssen, Timo and Kaminski, Margot}},
  issn         = {{0036-8075}},
  keywords     = {{Medical law; Medicinsk rätt}},
  language     = {{eng}},
  month        = {{02}},
  number       = {{6426}},
  pages        = {{448--450}},
  publisher    = {{American Association for the Advancement of Science (AAAS)}},
  series       = {{Science}},
  title        = {{Shadow health records meet new data privacy laws}},
  url          = {{http://dx.doi.org/10.1126/science.aav5133}},
  doi          = {{10.1126/science.aav5133}},
  volume       = {{363}},
  year         = {{2019}},
}