Tragedy of the Deidentified Data Commons An Appeal for Transparency and Access
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Tragedy of theDeidentified Data
CommonsAn Appeal for Transparency and Access
Jane BambauerJames E. Rogers College of Law
University of Arizona
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The Data CommonsInformation collected by the government
tax information, epidemiological data, census surveys,educational records, home mortgage data
Information collected by private companies
Anonymized and released*
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The Anonymization Problem
• Research subjects can be reidentified in anonymized databases “with astonishing ease.”AOLRe-identification of Gov. WeldNetflix re-identification
• Every privacy law must be rewritten to eliminate dependence on anonymization and to restrict access to all data (even deidentified data) without consent
Paul Ohm, Broken Promises of Privacy
57 UCLA L. REV. 1701
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Save the Data CommonsThe Data Commons has been used to:
• Detect housing and employment discrimination• Debunk the myth of the “welfare queen”• Inform the healthcare and
mortgage lending policy debates• Correct longstanding
misconceptions about crime and law enforcement
• Lots more…
Jane Yakowitz, Tragedy of the Data Commons
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Hazards of Covert Noise-Adding
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Hazards of Covert Noise-Adding
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Exaggerated Risks of ReidentificationThe Gov. Weld Example
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Exaggerated Risks of ReidentificationThe Gov. Weld Example
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Exaggerated Risks of ReidentificationThe Gov. Weld Example
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Gov. Weld Reidentification
Latanya Sweeney Collected Gov. Weld’s voter registration information and publicly available hospital data
Only one hospital patient matched Gov. Weld’s DOB, zip, and gender
Conclusion from analysis of US Census data:87% can be uniquely identified from DOB, zip, and gender
Golle recalculations:63% are unique using DOB, zip, and gender
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Daniel Barth-Jones, “Reidentification” of Governor William Weld
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Sweeney et al. 2013 PGP Study
579 Personal Genome Project participants provided their DOB, zip code, and gender
Using voter registration records and other commercial data sources, Sweeney et al. were able to reidentify 28%(accuracy unclear)
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2009 ONC Study
Out of 15,000 HIPAA-compliant records, 2 could be reidentified
.013% Chance of Reidentification
For comparison’s sake, chance of dying from an auto accident this year: .017%
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Total Number of Known Malicious Reidentifications
0 or 1*
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If I Were a Malicious Intruder…
3,101 reported data breaches in the U.S.
(about half a billion records)
700 reported breaches of health records
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If I Were a Malicious Intruder…
Sift through GarbageMake Inferences from Facebook ProfilesSwab a Coffee Cup
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What We Have to Lose• Fewer Opportunities for Replication• Fewer Voluntary Research Databases• Fewer Involuntary Public Databases• Increased Regulatory Precautions
More Status Quo Bias
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Vioxx “What If” StudyFrom Richard Platt’s FDA testimony in 2007
Vioxx approved May, 1999Removed from market September, 2004 (64 months)
Data on 7 million patients: 34 monthsData on 100 million: 3 months
88,000-139,000 avoidable heart attacks27,000-55,000 avoidable deaths