Shadow health records meet new data privacy laws

• Published in: Science (American Association for the Advancement of Science) Vol. 363; no. 6426; pp. 448 - 450
• Main Authors: Price, 2nd, W Nicholson, Kaminski, Margot E, Minssen, Timo, Spector-Bagdady, Kayte
• Format: Journal Article
• Language: English
• Published: United States The American Association for the Advancement of Science 01.02.2019
• Subjects: Big Data; Computer privacy; Confidentiality - legislation & jurisprudence; Consumer health information; Consumer protection; Data collection; European Union; General Data Protection Regulation; Genetic Privacy - legislation & jurisprudence; Health care; Health Insurance Portability and Accountability Act; Health Records, Personal; Health risk assessment; Humans; Information Dissemination - legislation & jurisprudence; Innovations; Laws; Personal health; Pictures; Privacy; Quality assessment; Shadows; United States; United States
• ISSN: 0036-8075; 1095-9203
• DOI: 10.1126/science.aav5133

How will research respond to a changing regulatory space? 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.