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Li Xiong CS573 Data Privacy and Security Healthcare privacy and security: Genomic data privacy

Li Xiong CS573 Data Privacy and Security Healthcare privacy and security: Genomic data privacy

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Li Xiong

CS573 Data Privacy and Security

Healthcare privacy and security:

Genomic data privacy

Genomic data privacy

Genomic data are increasingly collected, stored, and shared in research and clinical environments

Genomic data are person-specific (there exists no public registrar that maps genomes to names of individuals)

Genomic data is not specified as an identifying patient attribute under HIPAA privacy rule and may be released for public research purposes

How can person-specific DNA be shared, such that it cannot be associated to its explicit identity?

Data sharing scenario

John Smith admitted to a local hospital which stores clinical and DNA information

John visits other hospitals The hospital forward certain DNA data onto a

research group, with institution and pseudonyms of the patients

The hospital sends identified discharge record onto a state-controlled database

Data at a specific location

Identified table of patient demographics De-identified DNA sequences

Can we uniquely link identified data to DNA data?

Data at multiple locations

Each site has an identified table and de-identified DNA sequences

Can we uniquely link identified data to DNA data?

Trails

The set of locations each patient visited is called a trail

The trails can be tracked and matched to link DNA data to identified data

REIDIT-Complete

Re-identification of data in trails (REIDIT) for complete publishing

If there is a unique trail match, then a re-identification occurred

Results

REIDIT-C reidentification

Re-identifiability related to average # people per location

Reserved publishing Data releasers can reserve certain information N is reserved to P vs. P is reserved to N

REIDIT - Incomplete

REIDIT for reserved publishing

For each trail in the track with incomplete trails, if there is only one supertrail, then a re-identification occurred

Remove the re-identified supertrail Important because a trail can be a supertrail to

many trails Repeat the process

REIDIT-Incomplete

0.0, 0.1, 0.5, 0.9: probability of reserving information; hospital rank based on # of patients

Can masking location help?

Not necessarily!

Comments and open issues

Can k-anonymity solve the problem? Pseudonyms subject to dictionary attacks,

how to allow linkage of the data without pseudonyms

Genomic protection methods incorporating utility of the genomic data

De-identification

e.g. Utah Resource for Genetic and Epidemiologic Research (RGE)