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  • What is the best way to manage funding agencies’ mandates for data sharing with privacy concerns?
  • What ethical obligations does Harvey have share or protect the algorithms he used? What obligations do cryptographers have to accurately communicate privacy risks? What obligations do scientific journals carry to publish or protect methods that might be used for unethical purposes?
  • Should Large National Survey research participants be alerted of cryptographers’ findings as newly identified risks?
  • With the newly published algorithms, several other publically available research data sets are vulnerable: Should these data sets also be removed? Should participants be warned?
  • The Large National Survey Data Stewards create a computing enclave where the Public Use data can be accessed and analyzed but not downloaded. The capacity limitations render many types of analysis infeasible. What alternatives exist?
  • What standards or guidelines exist now for assessing tradeoffs between privacy risks and utility?
  • Should researchers working under IRBs receive any special status or trust that would distinguish them from members of the public so that they might combine data sets to add value to the data?
  • How can the risks of reidentification be balanced against the potential loss of valuable health insights that result from the removal of data sets from the public domain?
  • How can the risks of reidentification be balanced against the burden of limited data access for researchers and potential loss of health insights (e.g., when a researcher removes themselves and their entire research program from the public domain)?

Title

Response

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

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 individuals 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

Precision Medicine

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

 

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