Putting People on the Map Protecting Confidentiality with Linked Social-Spatial Data (2007) / Chapter Skim
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4 The Tradeoff: Confidentiality Versus Access
4 The Tradeoff: Confidentiality Versus Access
Pages 59-70
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From page 59... ...
Following our conclusions, we offer recommendations for data stewards, researchers, and research funders. CONCLUSIONS Tradeoffs of Benefits and Risks Recognition of the Benefits and Risks Making social data spatially explicit creates benefits and risks that must be considered in ethical guidelines and research policy.
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From page 60... ...
Promises of confidentiality that are normally provided for research participants and that can be kept when data are not linked could be jeopardized as a result of the data linkage, increasing the risk of disclosure and possibly also of harm, particularly when linked data are made available to secondary data users who may, for example, combine the linked data with other spatially explicit information about respondents that enables new kinds of analysis and, potentially, new kinds of harm. These risks affect not only research participants, but also the scientific enterprise that depends on participants' confidence in promises of confidentiality.
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From page 61... ...
CONCLUSION 2: The increasing use of linked social-spatial data has created significant uncertainties about the ability to protect the confi dentiality promised to research participants. Knowledge is as yet inad equate concerning the conditions under which and the extent to which the availability of spatially explicit data about participants increases the risk of confidentiality breaches.
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From page 62... ...
It is also not known whether and how the various synthetic data approaches can be applied when linking datasets. Secure Access Techniques for providing secure access to linked data, such as sharing sums but not individual values or conducting data analyses on request and returning the results but not the data may have the potential to provide results from spatial analyses without revealing data values.
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From page 63... ...
Institutional approaches must address issues of shared responsibility for the production, control, and use of data among primary data producers, secondary producers who link additional information, data users of all kinds, research sponsors, IRBs, government agencies, and data stewards. It is essential that the power to decide about data access and use be allocated appropriately among these responsible actors and that those with the greatest power to decide are highly informed about the issues and about the benefits and risks of the data access policies they may be asked to approve.
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From page 64... ...
It also addresses the need for research sponsors, research organizations such as universities, and researchers to pay special attention to data that record exact locations. In particular, we support several key recommendations of these reports: • Access to data should be provided "through a variety of modes, including various modes of restricted access to confidential data and unrestricted access to public-use data altered in a variety of ways to maintain confidentiality" (National Research Council, 2005a:68)
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From page 65... ...
Among the most promising techniques are spatial aggregation, geographic masking, fully and partially synthetic data and remote access model servers and other emerging methods of secure access and secure record linkage. Second, the research should include work to understand how the publication of spatially explicit material using linked social-spatial data might increase disclosure risk and thus to increase sensitivity to this issue.
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From page 66... ...
Training in Ethical Issues RECOMMENDATION 3: Training in ethical considerations needs to accompany all methodological training in the acquisition and use of data that include geographically explicit information on research par ticipants. Education about how to collect, analyze, and maintain linked socialspatial data, how to disseminate results without compromising the identities of individuals involved in the research, and how to share such data consonant with confidentiality protections is essential for ensuring that scientific gains from the capacity to obtain such information can be maximized.
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From page 67... ...
Research Design RECOMMENDATION 5: Primary researchers who intend to collect and use spatially explicit data should design their studies in ways that not only take into account the obligation to share data and the disclo sure risks posed, but also provide confidentiality protection for human participants in the primary research as well as in secondary research use of the data. Although the reconciliation of these objectives is difficult, primary researchers should nevertheless assume a significant part of this burden.
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From page 68... ...
Traditionally, IRBs have concerned themselves more with the collection of data than its dissemination, but the heightened risks to confidentiality that arise from linking social data to spatial data requires increased attention to data dissemination. Government agencies that sponsor research that requires the application of the common rule, the Human Subjects Research Subcommittee of the Executive Branch Committee on Research, and the Association for the Accreditation of Human Research Protection Programs (AAHRPP)
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From page 69... ...
Third, access to restricted data through virtual or place-based enclaves should be restricted to those who agree to abide by the confidentiality protections governing such data, and meaningful penalties should be enforced for willful misuse of the linked social-spatial data. High-quality science depends on sound ethical practices.
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From page 70... ...
Licensing RECOMMENDATION 8: Data stewards should develop licensing agreements to provide increased access to linked social-spatial datasets that include confidential information. Licensing agreements place the burden of confidentiality protection on the data user.
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