Research Accomplishments of Latanya Sweeney, Ph.D.


Medical Informatics
      Genomic identifiability
      Patient-centered management

Database Security

      Risk assessment server

      Face de-identification

      Contactless capture

Policy and Law
      Identifiability of de-identified data
      HIPAA assessments
      Privacy-preserving surveillance

Public Education
      Identity angel

Quantitative assessments

Policy and Law: Identifiability of de-identified data

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Problem Statement: Given person-specific data de-identified to a standard, provide methods that report the number of people that can be re-identified from the data and/or whether the data satisfies the standard.

Description: Dr. Sweeney's first contribution involved linking de-identified patient-specific medical data to a population register (e.g., a voter list) to re-identify patients by name [cite, cite]. She then showed that "87% of the U.S. Population are uniquely identified by {date of birth, gender, ZIP}." Her contributions expanded to include experiments on the identifiability of de-identified survey data [cite], pharmacy data [cite], clinical trial data [cite], criminal data [State of Delaware v. Gannett Publishing], DNA [cite, cite, cite], tax data, public health registries [cite (sealed by court), etc.], web logs, and partial Social Security numbers [cite]. A key related technology is the Risk assessment server, described separately. Her current work introduces “Fair Data Sharing Practices,” a set of practices weaved with accompanying technologies that help assure compliance, as a way for society to move forward with data sharing while assuring privacy protections [cite].



Scientific Influence and Impact: Dr. Sweeney's earliest work was discussed and cited as reasons for approaches taken in the HIPAA Privacy Rule [Gellman, Federal Register, et al.]. Four court decisions cite and discuss her re-identifications, and in one case, her method was sealed [Southern Illinoisian v. Dept. of Public Health]. Researchers have replicated her experiments in other countries [Emam, et al.]. Legal scholars discuss ramifications [Kerr, et al.] and offer new legal theories to address her findings [Rothstein, Ohm, Weitzner, et al.].

Other Achievements: 12

  • Discussed in the federal commentary of the HIPAA Privacy Rule, in 4 court decisions, and in 19 law review journal articles. Included in testimony or briefings to EU, DHS, DOD, NCVHS, HCFA, and U.S. Senate.

  • Privacy Advocate Award from the American Psychiatric Association (rarely given).

  • Identifiability papers [cite, cite] have statistically significant citation counts (at 99th percentile) among medical informatics papers.

  • Identifiability paper [cite] is among 5% (58/1156) of those from Associate Professors in the School of Computer Science at Carnegie Mellon University that enabled successful work by others.

  • Among 28 news articles specifically profiling aspects of this work. Venues include Scientific American, CBS News, ABC News, Newsweek, USA Today, and NPR.


12 See quantitative assessments for more details.

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Fall 2009