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Description

Under terms of funding from NIH, data sets collected with public funds must be made available while protecting privacy. Privacy researchers have shown that such data sets do not truly protect privacy, an issue that has received substantial public attention. This has resulted in more conservative approaches by data stewards, increasing barriers to data use by researchers.

Primary actor/participant

Researcher, Data Stewards

Support actor/participant

Funding agency

Preconditions

• Data Sharing Policies from funding agencies exist
• Participants have been consented
• Public data repository can be accessed and combined with other public data
• IRB and other required approvals

Post conditions

• The researcher collects and analyzes the data for a specific research study.
• Data sets are removed from public access

Alternatives

• Cryptographers do not alert data stewards before results are released
• Cryptographers post code online and make it available for unrestricted use
• In addition to Drug Discovery, Venture Capital Drug Discovery Firm is selling data to marketers about the likely identities of patients and their treating physicians for drug detailing.

Considerations

• Conflicts between mandates of funding agencies for data sharing and privacy concerns
• Conflicting interests between cryptography research publishing incentives, privacy of research participants, and
• Public perception of risk vs. actual risk.

Data Elements Considered

Survey, Laboratory, Demographic, and Geocoded Data about Environmental Risks, consented data from administrative claims

Purpose of the Data Collection

Research

Purpose of Data Use

Research

Terms of Transfer to the Data Holders

Consent

Terms of Transfer to Researchers

IRB approval, agreements negotiated with data stewards