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Appendix B: Ethical Issues Related to Linked Social-Spatial Data
Pages 123-159

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From page 123...
... The mesh of technological advances, computational capacity, multilevel statistical models, spatial analysis software, and robust data mining and management techniques makes it a ripe time for new explorations and applications to come to the fore using very precise locational information.2 Along with these improved measurements and analytic methods come ethical issues regarding how best to use these new capabilities consonant with protecting the interests of research participants involved in such studies. The most immediate ethical issue raised by linking different datasets or resources of any form is whether the integration of such information encroaches on the privacy of research subjects or compromises the confidentiality of information that otherwise is secure.
From page 124...
... . Third, we consider the range of ways ethical issues can manifest themselves in the course of collecting, providing, or using linked social-spatial data and how researchers might best advance ethically sound research and approach review by an institutional review board (IRB)
From page 125...
... In emphasizing ethical considerations in research linking social and spatial data, we also do not intend to sidestep attention to the human research protection programs in place at academic or research institutions or the centrality of their IRBs for approval and oversight of research. Nor do we intend to minimize the challenge that can be involved in raising complex ethical issues to IRBs in areas in which the decision-making procedures are not yet developed.
From page 126...
... A second challenge flows from the fact that there is very limited research-based evidence about how ethical issues related to human research protection play out in the context of the collection or use of social and spatial research. In general, empirical study of ethical issues is far too scant across even well-established domains of inquiry, let alone new areas of research.8 The small body of literature addressed to linking social and
From page 127...
... 63) .9 THE BELMONT PRINCIPLES AS AN ETHICAL FRAMEWORK In addition to drawing on ethics codes, recent national commissions, and relevant National Research Council panels, contemporary discussions of ethical considerations with social and spatial data (largely directed to issues of confidentiality)
From page 128...
... As specified in the Belmont Report, respect for persons requires informed consent of research participants -- meaning the provision of adequate information, participants' comprehension of that information, and their voluntariness to be part of the research. Assessment of risk and benefits of research is closely related to beneficence -- including an assessment of the probability of experiencing a harm, the magnitude of that harm (whether physical, psychological, legal, social, or economic)
From page 129...
... Like privacy and confidentiality, ethical guidance on data sharing can be deduced from the Belmont Report, but data sharing is not explicitly addressed in either this document or in 45 CFR 46. Much of ethical guidance in human research has focused on the intervention, interaction, and information acquisition processes.
From page 130...
... ETHICAL CONSIDERATIONS, THE RESEARCH CONTEXT, AND RESEARCH PLANNING IN SOCIAL AND SPATIAL RESEARCH Ethical Considerations In general, the collection, use, and analysis of linked social-spatial data raise ethical issues that parallel those involved generally in handling identifiable, large-scale data sets on individuals or groups, whether the data are acquired directly or indirectly, and specifically when research involves linkages among microlevel data. Although not as powerful an individual identifier as DNA or other genetic material used in genetic studies, precise coordinate data in the social sciences is at once an identifier and a compelling social indicator that rivals most other forms of contextual measurement because it is location-specific and can be collected repeatedly, in multiple sites, and on a very large scale.
From page 131...
... Contexts of Research In research involving the linkage of social and spatial data, there are a large number of persons who collect, use, or otherwise make decisions about how to maintain, preserve, and make such information available. Depending on the context, different individuals connected with the research may take on various roles in the development of a particular human research protection plan or the articulation of a strategy that will engender confidence in data sharing and use.
From page 132...
... Purposive Planning From the vantage of human research protection and review of research by an institutional review board, there are some immediate ethical questions for primary researchers and secondary users to consider. It is optimal, for example, to determine in advance whether data collection or linked analyses will be individually identifiable only by virtue of obtaining and using locational data; whether or not the consent of research participants will be obtained and, if so, in what form and with what assurances; and whether the likely benefits and the potential harms can be specified, and, in the case of potential harms, whether steps can be taken to ensure that they are low (e.g., embarrassment versus legal liability)
From page 133...
... THE BELMONT PRINCIPLES AND QUESTIONS TO GUIDE ETHICAL DECISION MAKING The principles and standards specified in the Belmont Report provide a useful tool for the responsible planning and implementing of social and spatial research. For example, they can guide in assessing whether exact spatial data affect determinations of what constitutes human subjects research; judging the risks and benefits of certain research topics; and sorting out issues of confidentiality, data access, and data sharing.
From page 134...
... Human Subjects Research Social and spatial research that otherwise involves no interaction or intervention can become human subjects research as defined in the Federal Regulations for the Protection of Human Subjects because precise coordinate data allows for personal identification. The Belmont principles are directed to the conduct of research with human subjects, and these principles shape the boundaries of what constitutes human subjects research in the federal regulations.
From page 135...
... Secondary analysts need to weigh what forms of data meet their needs and what benefits to research may be lost without the use of more precise locational information.21 Many of the sophisticated techniques that have been employed to preserve and optimize the analytical value of data to secondary users can be generalized to social and spatial data. Data releases can vary depending on the needs of the secondary users.
From page 136...
... 23 Consent and Confidentiality Agreements Informed consent of research participants is the standard ethical requirement for human subjects research. Researchers have an ethical responsibility to show respect for persons and earn their trust based on the assumption that people have agreed to participate on a voluntary basis and with sufficient information and understanding to make a decision.
From page 137...
... There is good general guidance in ethics codes and in recent reports on informing research participants about future data use that is equally applicable to primary researchers and data producers engaged in social and spatial research (see, e.g., National Research Council, 2005, Recommendation 14, pp.
From page 138...
... With unsavory or undesirable human subjects, benefits may not accrue, but neither should direct harm due to their willingness to participate, assuming they are aware of ethical and legal limits.29 Overall, in assessing and communicating the benefits of research, the salient ethical questions for researchers include: Are the research participants or their communities likely to benefit from more geographically explicit research? Are they likely to receive far fewer benefits if the use of geospatial data is severely restricted?
From page 139...
... Precise coordinate data may continue to have analytic meaning for many years, but risks associated with its use may reduce over time as migration and other life course changes alter the identifiability of these data. Nevertheless, in implementing ethically responsible research and planning for access, issues for consideration include: What technical approaches can be used, and to what extent should they be used to reduce the identifiability of social and spatial data while still retaining their scientific and analytic value?
From page 140...
... Thus, the emphasis on strong data protection plans and conditions of responsible use is as important as masking data beyond a point at which its value would be substantially compromised. ETHICS OF DISSEMINATION, SHARING, ACCESS, AND THE CONFIDENTIALITY NEXUS As the foregoing discussion has emphasized, ethical decision making prominently includes attention to issues of confidentiality, but ethical considerations are larger and more comprehensive than confidentiality alone.35 Because of the considerable scientific value of using precise coordinate data by primary researchers and secondary analysts, there is an inevitable tension between data dissemination or sharing and doing so consonant with the promises made to research participants not to disclose their identities or identifiable personal information about them.
From page 141...
... Thus, it may be necessary in presentations or published work to coarsen the displays, swap data, or extrapolate to similarly situated geographic spaces in the same or an equivalent neighborhood, or take other steps that allow for the reporting of results while preserving the confidentiality of linked social-spatial data.37 Sharing Given work of the scope, size, and significance of social and spatial research, the ethics of inquiry commends data sharing on the part of primary researchers and data collectors. Like the dissemination of results, data sharing also contributes to the important Belmont principle of contributing to the accumulation of knowledge.
From page 142...
... Especially with social and spatial data and other forms of information that may be readily identifiable, primary researchers and data producers need to ensure that research subjects are sufficiently informed about potential use of the data and to develop data sharing plans that can reasonably be expected to protect the identities of human subjects and personal information about them. As noted earlier, even with research in which potential harms are minimal, the broader commitment of honoring confidentiality agreements with research participants looms large even if the consequences of disclosure of personal identifiable information are small.
From page 143...
... explicitly set forth the obligations of secondary analysts for responsible use.45 With data that are either publicly available or available through limited or restricted forms of access, typically researchers have an ethical requirement to use data in their current form, without the integration of additional data or enhancements of other information, unless they take additional steps to assess the ethical issues related to an expansion or change. Except for data that are publicly available, this obligation also includes not otherwise sharing data with tertiary users.
From page 144...
... Primary data collection includes obtaining the consent of research participants, but practices may vary widely as to whether data sharing or future use is noted as part of that process.46 At the data management, analysis, and dissemination stages, research preparation focuses on how to store or provide access to data at varying levels of disclosure risk or turns to technical and statistical questions about how to retain scientific value without jeopardizing confidentiality agreements. These are all important issues for those engaged in producing or using linked social-spatial data, but, in these contexts, guidance is aimed at being more instructive about the requirements for use than educative about them.
From page 145...
... The current emphasis on responsible research conduct as part of the regulatory clime could support a shift in attention to ethical issues if it could be meaningfully encouraged by federal agencies and meaningfully implemented by researchers and their institutions. Research societies in the social and behavioral sciences have sought to focus greater attention on human research ethics among their members and in departments that train in their fields (see, e.g., Iutcovich, Kennedy, and Levine, 2003; Levine and Iutcovich, 2003)
From page 146...
... Collaborative efforts across research societies and stewardship organizations could very well provide a framework for both offering high-quality education and further encouraging graduate departments to do so as an integral part of their training programs. Outreach should also include efforts directed to fields of science engaged in social and spatial research but with less experience in human research and related ethical issues.
From page 147...
... Institutional programs can be established and approved that allow IRBs to avoid mechanistic application of rules and to use the flexibility accorded to them. Openness to the coordination of multisite review or to preapproval for certain types of timesensitive data collection are just two procedures that IRBs could introduce to facilitate review of social and spatial research consonant with human research protection.
From page 148...
... Part of doing so requires essential expertise on IRBs or IRBs involving expert consultants related to the technical and ethical issues involved in social and spatial research. Representation on the IRB of scientists knowledgeable in spatial measurement, in data disclosure methods, and in approaches that can ameliorate risk would be optimal when there are sufficient numbers of relevant protocols.
From page 149...
... There is general awareness that human research considerations are shaped by too many assumptions about research participants (see, e.g., Levine and Skedsvold, 2007)
From page 150...
... If addi tional data are to be linked by the secondary analyst, then IRB review is required because the additional data integration (whether or not there is new primary data collection) changes the conditions of research and potentially raises new ethical considerations in relation to research participants that need to be addressed.
From page 151...
... 30. "Risk" and "harm" are terms that are often conflated (see the Risk and Harm Report of the Social and Behavioral Sciences Working Group on Human Research Protections at http://www.aera.net/aera.old/humansubjects/risk-harm.pdf)
From page 152...
... . For a compilation of federal research confidentiality statutes and codes prepared by the Social and Behavioral Sciences Working Group for the National Human Research Protections Advisory Committee, see http:// www.aera.net/aera.old/humansubjects/NHRPAC_Final_Conf_Table.pdf.
From page 153...
... 46. Practices are changing as federal funding agencies like NIH are more explicit about data sharing and the need to address data sharing or future use as part of the process of obtaining informed consent.
From page 154...
... 51. Effective October 2000, NIH requires education on the protection of human research participants for all investigators submitting applications for research involving human subjects under contracts or awards.
From page 155...
... IRB: Ethics & Human Research 26(July-August)
From page 156...
... Downs, and K Davis-Packard 2005 Confidentiality Issues and Policies Related to the Utilization and Dissemination of Geospatial Data for Public Health Applications.
From page 157...
... . National Human Research Protections Advisory Committee 2002 Recommendations on Confidentiality and Research Data Protections.
From page 158...
... Kassam-Adams 2006 Ethical issues in trauma-related research: A review. Journal of Empirical Re search on Human Research Ethics 1(3)
From page 159...
... Journal of Empirical Research on Human Research Ethics 1(1)


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