Dataset Information

Re-identification Risks in HIPAA Safe Harbor Data: A study of data from one environmental health study.

ABSTRACT: Researchers are increasingly asked to share research data as part of publication and funding processes and to maximize the benefits of publicly funded research. The Safe Harbor provision of the U.S. Health Information Portability and Accountability Act (HIPAA) offers guidance to researchers by prescribing how to redact data for public sharing. For example, the provision requires removing explicit identifiers (such as name, address and other personally identifiable information), reporting dates in years, and reducing some or all digits of a postal (or ZIP) code. Is this sufficient? Can research participants still be re-identified in research data that adhere to the HIPAA Safe Harbor standard? In 2006, researchers collected air and dust samples and interviewed residents of 50 homes from Bolinas and Richmond (Atchison Village and Liberty Village), California, to analyze the residents' exposure to pollutants. The study, known as the Northern California Household Exposure Study [1], led to publications that have been cited hundreds of times. We conducted experiments with separate "attacker" and "scorer" teams to see whether we could identify study participants from two versions of the data redacted beyond the HIPAA standard, one in which all dates were reported in ranges of 10 or 20 years and another in which a study participant's birth year was reported exactly. The attackers were blinded to the names and addresses of the participants, and the scorers were blinded to the strategy.

SUBMITTER: Sweeney L

PROVIDER: S-EPMC6344041 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Re-identification Risks in HIPAA Safe Harbor Data: A study of data from one environmental health study.

Sweeney Latanya L Yoo Ji Su JS Perovich Laura L Boronow Katherine E KE Brown Phil P Brody Julia Green JG

Technology science 20170828

Researchers are increasingly asked to share research data as part of publication and funding processes and to maximize the benefits of publicly funded research. The Safe Harbor provision of the U.S. Health Information Portability and Accountability Act (HIPAA) offers guidance to researchers by prescribing how to redact data for public sharing. For example, the provision requires removing explicit identifiers (such as name, address and other personally identifiable information), reporting dates i ...[more]

PMID: 30687852

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Project description:BACKGROUND:Sharing research data uses resources effectively; enables large, diverse data sets; and supports rigor and reproducibility. However, sharing such data increases privacy risks for participants who may be re-identified by linking study data to outside data sets. These risks have been investigated for genetic and medical records but rarely for environmental data. OBJECTIVES:We evaluated how data in environmental health (EH) studies may be vulnerable to linkage and we investigated, in a case study, whether environmental measurements could contribute to inferring latent categories (e.g., geographic location), which increases privacy risks. METHODS:We identified 12 prominent EH studies, reviewed the data types collected, and evaluated the availability of outside data sets that overlap with study data. With data from the Household Exposure Study in California and Massachusetts and the Green Housing Study in Boston, Massachusetts, and Cincinnati, Ohio, we used k-means clustering and principal component analysis to investigate whether participants' region of residence could be inferred from measurements of chemicals in household air and dust. RESULTS:All 12 studies included at least two of five data types that overlap with outside data sets: geographic location (9 studies), medical data (9 studies), occupation (10 studies), housing characteristics (10 studies), and genetic data (7 studies). In our cluster analysis, participants' region of residence could be inferred with 80%-98% accuracy using environmental measurements with original laboratory reporting limits. DISCUSSION:EH studies frequently include data that are vulnerable to linkage with voter lists, tax and real estate data, professional licensing lists, and ancestry websites, and exposure measurements may be used to identify subgroup membership, increasing likelihood of linkage. Thus, unsupervised sharing of EH research data potentially raises substantial privacy risks. Empirical research can help characterize risks and evaluate technical solutions. Our findings reinforce the need for legal and policy protections to shield participants from potential harms of re-identification from data sharing. https://doi.org/10.1289/EHP4817.

Dataset Information

Re-identification Risks in HIPAA Safe Harbor Data: A study of data from one environmental health study.

Publications

Re-identification Risks in HIPAA Safe Harbor Data: A study of data from one environmental health study.

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