Shadow health records meet new data privacy laws
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How will research respond to a changing regulatory space?
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The CCPA applies to much information in shadow health records, meaning health data collected outside the health system.
“However, it applies to a great deal of information in so-called “shadow health records”—health data that is collected outside of the health system ([98], p. 449).”
From Ethical and legal challenges of artificial intelligence-driven healthcare (2020) · cites this paper as [98]
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- Authors
- Price, W. N., Kaminski, M. E., Minssen, T., & Spector-Bagdady, K.
- Affiliations
- University of Copenhagen (DK)
- University of Colorado Boulder (US)
- Department of Obstetrics and Gynecology, University of Michigan Medical School, Ann Arbor, MI, USA.
- Corresponding author
- Price, W. Nicholson
- Venue
- Science
- Published
- 2019-02
- Volume
- 363
- Issue
- 6426
- Pages
- 448-450
- ISSN
- 0036-8075 (ISSN-L)
- 1095-9203
- PMC
- PMC6417878
- OpenAlex
- W2911771661
- Cited by
- 59
- References
- 7
- Citations by year
- 2026: 3 · 2025: 7 · 2024: 4 · 2023: 11 · 2022: 8 · 2021: 9 · 2020: 12 · 2019: 5
- FWCI
- 10.58
- Type
- journal article
- Language
- en
- Open access
- Locations
- Science (publishedVersion)
- PubMed (publishedVersion)
- Research at the University of Copenhagen (University of Copenhagen) (publishedVersion, other-oa)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- eYLS (Yale Law School) (submittedVersion)
- bepress Legal Repository (submittedVersion)
- Colorado Law Scholarly Commons (University of Colorado Colorado Springs) (submittedVersion)
- Lund University Publications (Lund University) (submittedVersion)
- Funders
- Novo Nordisk Fonden (NNF17SA0027784)
- National Cancer Institute (R01CA214829)
- Topics
- Physical Sciences › Computer Science › Information Systems › Thoreau and American Literature
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Keywords
- health data privacy, data privacy law, health data regulation, health research
- MeSH terms
- Big Data, Confidentiality, European Union, Humans, United States, Health Insurance Portability and Accountability Act, Genetic Privacy, Information Dissemination, Health Records, Personal
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