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Apppendix B Ethical Issues Related to Linked Social-Spatial Data Felice J. Levine and Joan E. Sieber The ethics of research related to linking geographically explicit spatial data1 and individual-, household-, or group-level social data is an issue of scientific and social significance. The capacity to measure location and context over time and with exact precision offers substantial opportunities to comprehend human, social, biological, and environment activities, inter- actions, and transformations at a level of sophistication that could not have been anticipated just a decade ago. The mesh of technological advances, computational capacity, multilevel statistical models, spatial analysis soft- ware, 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 partici- pants 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 en- croaches on the privacy of research subjects or compromises the confiden- tiality of information that otherwise is secure. Attention to issues of privacy of persons and confidentiality of data has increased over recent years.3 There is growing awareness of the scientific value of sharing data, the greater contributions made possible with microlevel data, and the potential uses from linking different datasets. Yet there is also mindfulness of the potential risks of confidentiality breaches due to intentional or inadvertent disclosure. In this current context, not unexpectedly, opportunities for link- 123
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124 APPENDIX B ing social and spatial data have also been accompanied by serious discus- sion of the confidentiality issues and policies involved in doing so (see, e.g., Rindfuss and Stern, 1998; VanWey et al., 2005; Golden, Downs, and Davis- Packard, 2005; Gutmann et al., 2005). Whether in the biomedical or the social-behavioral sciences, new meth- odological capabilities or work at the frontiers of discovery invariably re- quires fresh consideration of ethical issues as an integral part of research. Especially in nascent areas of science in which practical experience is lim- ited, grappling with ethical issues needs to go hand-in-hand with confront- ing theoretical, methodological, and operational considerations.4 Thus, it is notable that those attracted to or engaged in linking spatial and social data have already initiated the process of thinking reflectively and construc- tively about matters of confidentiality and reduction of the risk of informa- tion disclosure. The establishment of a National Research Council Panel on Confidentiality Issues Arising from the Integration of Remotely Sensed and Self-Identifying Data, with funding from the National Institutes of Health, the National Science Foundation, and the National Aeronautics and Space Administration, to address such confidentiality issues is a strong indicator of the salience of this topic to data producers, users, archivists, database managers, and those who review and support such work. The purpose of this paper is to consider the ethical issues that come into play in research that links social and spatial data. Our aim is to present an overview of the ethical issues regarding the protection of human subjects, for researchers engaged in primary collection of social and spatial data, and for those engaged in secondary use of such data. First, we briefly highlight the ethical guidance available for researchers or research teams as they consider how best to undertake research on these data or provide such data to others. Second, we elaborate on and recommend as guidance the frame- work of ethical principles enunciated in the now classic 1979 Belmont Report, Ethical Principles and Guidelines for the Protection of Human Subjects of Research (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). 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 research- ers might best advance ethically sound research and approach review by an institutional review board (IRB). Fourth, we examine such issues as con- sent, privacy and confidentiality, benefits and harm, and assessments of risk of harm and how to address them in research that either links or uses linked social-spatial data. Fifth, we specifically discuss the ethics of data dissemi- nation, sharing, and access—emphasizing issues important to social-spatial research. Finally, we consider ethics education and training for those who collect, prepare, provide access to, use, or review research that links social and spatial data.
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125 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA This focus on ethical considerations in social and spatial research is distinct from an analysis of the legal requirements that could apply depend- ing on the data that are to be obtained. Use of extant information sources may be protected by privacy laws. Some of the most promising social and spatial research is addressed to issues in which privacy regulations are germane. Health research, for example, is a key area of inquiry in which access to confidential records, including precise locational information, could have tremendous scientific value and benefits to society. The Health Insurance Portability and Accountability Act of 1996 (HIPAA)5 protects individual privacy but allows for the use of health records for research without individual authorization. Such research needs to be evaluated as no more than minimal risk and needs to conform with a set of procedures and alternative methods to avert disclosure (e.g., meeting 18 specified criteria for deidentification, having a qualified expert determine what needs to be done to prepare the data for release).6 While researchers, data providers, and research analysts need to be mindful of legal requirements in planning their research, our purpose is directed to the ethical considerations that should guide collecting, gaining access to, analyzing, disseminating, or shar- ing such data irrespective of whether certain standards of privacy and confidentiality are required by law. 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 proce- dures are not yet developed. We do discuss the IRB review process directly. Our purpose in taking a broader approach to ethical decision making with social and spatial data is to focus attention on the research enterprise itself and how best to weigh factors in planning and executing research or in using or making accessible linked social-spatial data. We consider interac- tion with IRBs to be a key step in that process. While IRBs have direct institutional responsibility for the review of protocols and determinations about human research protection as stipulated in the Code of Federal Regu- lations for the Protection of Human Subjects (45 CFR 46),7 we see this interaction between researcher (producer/user) and IRB, and how to navi- gate it, as a part of the process of ethical decision making in human re- search, not as constituting that process in and of itself. Furthermore, many decisions having ethical implications are identifiable to the researcher not only prior to interacting with the IRB but also afterward; we regard these latter decision points to be integral to the overall process of ethical conduct.
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126 APPENDIX B ETHICAL GUIDANCE AND HUMAN RESEARCH PROTECTION Given the social and behavioral science backgrounds of many of those engaged in social and spatial research, it might be expected that ethical norms would primarily derive from frameworks in these and adjacent fields. Although there are variations among codes of conduct (e.g., whether or not a code of ethics explicitly encourages data sharing), general standards in the social sciences have much in common regarding such issues as informed consent, intrusions on privacy, confidentiality and its limits, and benefits and harm. Whether the codes were promulgated in detail by the American Psychological Association (2003) or the American Sociological Association (1997) or in more summary fashion by the American Anthropological As- sociation (1998), the Association of American Geographers (1998), the American Political Science Association (1998), the American Statistical As- sociation (1999), or the American Association for Public Opinion Research (2003), there is on balance considerable consistency in their guidance. One visible marker of specific interest in ethical considerations related to spatial data is the approval in 2003 of a geographic information systems (GIS) code of ethics by the Urban and Regional Information Systems Asso- ciation (2003). By design, the code builds on a study of several dozen other codes. It states, among other guidance, that the GIS professional will pro- tect individual privacy, especially about sensitive information; will encour- age individual autonomy, including allowing individuals to withhold con- sent from being in a database, correct information, or remove themselves from a database; and will avoid undue intrusions into the lives of individu- als (Urban and Regional Information Systems Association, 2003). Exposure to research with human participants and related codes of conduct is by no means uniform among scientists and other specialists engaged in social and spatial research. Experts in remote sensing and other sophisticated locational measurements are typically not from the social and behavioral sciences or the health sciences, in which individuals or groups are the focus of inquiry and in which ethical guidance emphasizes the protection of human participants in research. Thus, in addition to the scientific richness of this interdisciplinary arena of study, there is also the challenge of fostering a deep appreciation among diverse researchers and research communities of the ethical issues at stake at each stage of the research process, from primary data collection through secondary use. A second challenge flows from the fact that there is very limited re- search-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
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127 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA spatial data evidences an appreciation that this research area is a dynamic and fluid one and that expert knowledge can help produce research ap- proaches that maximize advancing science consonant with human research protection principles. For example, Armstrong, Rushton, and Zimmerman (1999) do so by examining alternative methods of masking individual-level health data, testing the security of each approach for preserving confidenti- ality while permitting important uses. Similarly, Kwan, Casas, and Schmitz (2004) test three geographic masks with different perturbation radii to identify the optimum tradeoff between data confidentiality and accuracy of analytic results. These forms of empirical examination hold promise of producing useful guidance. Less directly, but also germane, Kwan and Lee (2004), using three-dimensional geovisualization methods and activity– travel diary data, found gender differences in time use, mobility, and travel patterns, but at the same time they cautioned that “individual-level activ- ity–travel data geocoded to street addresses, given their reasonable degree of positional accuracy, may lead to considerable risk of privacy violation” (p. 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) are taking place in the context of more than a 30- year history of ongoing attention to these issues in research and writing.10 More visible than any other, the Belmont Report articulated three over- arching ethical principles that continue to offer a framework for respon- sible research conduct as well as form the basis of the Code of Federal Regulations for the Protection of Human Subjects (45 CFR 46). This re- port, issued by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, states the purpose of these principles as follows (p. 3): Three principles, or general prescriptive judgments, that are relevant to research involving human subjects are identified in this statement. Other principles may also be relevant. These three are comprehensive, however, and are stated at a level of generalization that should assist scientists, subjects, reviewers and interested citizens to understand the ethical issues inherent in research involving human subjects. These princi- ples cannot always be applied so as to resolve beyond dispute particular ethical problems. The objective is to provide an analytical framework that will guide the resolution of ethical problems arising from research involv- ing human subjects.
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128 APPENDIX B Thus, in setting forth these principles, the commission sought not to dictate but to create a culture of ethical decision making that could effectively serve researchers and IRBs alike. The three ethical principles that are the foundation of the Belmont Report are respect for persons, beneficence, and justice. Depending on the complexities of a situation, the Belmont Report emphasizes that ethical decision making can—and often does—require balancing competing claims in order to accomplish the overall goals of the principles themselves. Briefly put, the principles are defined as: 1. Respect for Persons—Respect for persons incorporates at least two ethical convictions: first, that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection. . . . In most cases of research involving human subjects, respect for persons demands that subjects enter into the research voluntarily and with adequate information. . . . 2. Beneficence—Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being. . . . The obligations of beneficence affect both individual investigators and society at large, because they ex- tend both to particular research projects and to the entire enterprise of research. . . . 3. Justice—Who ought to receive the benefits of research and bear its burdens? This is a question of justice, in the sense of “fairness in distribu- tion” or “what is deserved.” An injustice occurs when some benefit to which a person is entitled is denied without good reason or when some burden is imposed unduly. . . . It is the application of the principles of the Belmont Report that leads to considerations of informed consent, risk-benefit assessment, and the selection of subjects for research. As specified in the Belmont Report, respect for persons requires informed consent of research participants— meaning the provision of adequate information, participants’ comprehen- sion of that information, and their voluntariness to be part of the re- search. 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), and the benefits that might derive to research par- ticipants or society from that research. The importance of risk reduction is also a concept emphasized in the Belmont ethical guidance. The third Belmont principle—justice—is embodied in the requirement that the se- lection of subjects needs to be appropriate to the research and ought not
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129 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA to place an undue burden on certain populations or disadvantage them through omission as research participants.11 Privacy and confidentiality are not explicitly mentioned in the Belmont Report, although they follow from the principles of respect for persons and beneficence and both are made explicit in 45 CFR 46.12 Privacy refers to the interest that persons have in controlling others’ access to them and private information about them. Individuals can vary in what they consider intrusive about themselves. In a research context, as long as human subjects willingly agree to participate in the research, can freely decide against pro- viding certain forms of information, and can end their participation at any point, they have preserved their privacy right to control their information. Confidentiality refers to how data will be handled by researchers, other data producers, and ultimately secondary analysts consonant with agree- ments with human subjects regarding private information.13 A corollary to participants’ providing access to information in this trusting relationship is that researchers have the ethical responsibility to avoid intrusion on partici- pants’ privacy and to minimize the likelihood of harm from the disclosure of private information (both identity and attribute disclosure14 ). This com- mitment takes the form of a confidentiality agreement that provides assur- ances to research participants about what will be done with identifiable and private information about them. Except when data are collected anony- mously (i.e., without identifying information) or the researcher is collecting only public information, the Belmont principles of respect for persons and beneficence lead researchers to consider confidentiality as part of the con- sent process and put into place data protection plans to reduce the likeli- hood of personal identification. 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 guid- ance in human research has focused on the intervention, interaction, and information acquisition processes. There has been far less attention to dis- semination of results, access to data, or subsequent data use.15 The Belmont principle of beneficence emphasizes the value of addressing benefits that can accrue to participants, similarly situated others, and the larger society as well as to the entire research enterprise. Broad in its scope, this principle is particularly applicable to weighing gains that can come from data shar- ing—including the verification of results, consideration of competing hy- potheses, and examination of new questions. Overall the Belmont principles and derivative applications provide desiderata to help inform the ethical conduct of social and spatial research. Since the Belmont principles were developed primarily by physicians, they do reflect a conception of harm and benefit more appropriate to biomedical research than to social and behavioral science research. This emphasis is
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130 APPENDIX B problematic when the primary ethical concern is a possible invasion of privacy or a confidentiality breach due to using analytically precise coordi- nate data rather than when the concern is direct risk of physical harm. Similarly, the notion of autonomy set forth in the Belmont principles and operationalized via informed consent is much harder to understand when the choice is whether to participate in a survey linked to a complex set of locational measurements rather than when the choice is whether to partici- pate in a treatment program that involves specific physical risks and ben- efits to the individual. Nevertheless, although the Belmont principles leave room for debate and uncertainty when applied to social and behavioral phenomena, the basic concerns of the principles and their emphasis on nuanced ethical decision making commend their use. By design, the principles offer not answers, but expectations for balanc- ing important considerations in undertaking ethically responsible research. The Belmont principles undergird the Federal Regulations for the Protec- tion of Human Subjects and are also pervasively used across fields of hu- man research. Their strength, however, lies in comprehending the flexibility that they were intended to foster, not in invoking them in a formulaic fashion. No ethical principles taken off the shelf can resolve dilemmas. Thus, in using the Belmont principles, researchers, data providers, and secondary analysts need to extrapolate from them to think through how they apply to social and spatial research. 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 identi- fiable, large-scale data sets on individuals or groups, whether the data are acquired directly or indirectly, and specifically when research involves link- ages among microlevel data. Although not as powerful an individual iden- tifier as DNA or other genetic material used in genetic studies, precise coordinate data in the social sciences is at once an identifier and a compel- ling social indicator that rivals most other forms of contextual measure- ment because it is location-specific and can be collected repeatedly, in multiple sites, and on a very large scale. It is rare, perhaps even unique, to have a single measure or indicator essentially serve as an exact identifier, either alone or in combination with only a few other variables. The ethical principles and applications enunciated in the Belmont Re- port provide a framework for unraveling some of the complexities of social- spatial research. The ethical issues are at one level familiar ones: grappling
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131 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA with how best to honor confidentiality agreements with research partici- pants, minimize risk of disclosure of private information and potential harm, and maximize the benefits that can flow from research and access to the data. The potential identifiability of individuals and groups in studies involving linked social-spatial data makes it important for researchers to consider informed consent and the situations in which it can be waived; the nature of confidentiality agreements and protections; the risk of breaches of confidentiality and steps to ameliorate that risk; the magnitude of any potential harm from disclosure; and the benefits that can accrue to partici- pants, their communities, or the larger society. Attending to these considerations does not per se distinguish social and spatial research from other inquiries that cannot be undertaken anony- mously or that involve identifiable and potentially sensitive personal infor- mation. With precise spatial data, the threshold for identifiability may be lower than in research in which analytic measures are not also personal identifiers, but the ethical principles shaping researchers’ responsibilities are the same. Technological advances that can aid research can also con- tribute to increasing the probability of identification. For example, research using video recordings to study behavior in public places or that have research participants use wearable computers to monitor movement and interactions in work or social groups has considerable scientific potential, but it can also increase the risk of identifiability, even if the consequent harm is quite minimal. Similarly, spatial measurements are sufficiently pre- cise in that they are at once invaluable to research and yet could make difficult protecting the identities of individuals and information about them from inadvertent or intrusive disclosure. The very complexity of undertaking research of this genre does not mean that the work inherently involves more than minimal risk in terms of the type of harm or the likelihood of its occurrence. Also, research proce- dures can be put into place to reduce or ameliorate risk to a minimal level. Responsible conduct in research commends the use of advanced measure- ments and technologies to maximize scientific progress and the benefits of research while ensuring that any risk of harm for participants remains low. 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 re- search protection plan or the articulation of a strategy that will engender confidence in data sharing and use. The basic principles underlying ethical
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132 APPENDIX B decision making, whether by data producers or users, are no different from those in similarly complex, large-scale studies about people and their lives in which there can be data from multiple sites, multiple sources, and mul- tiple time points. In all such research, there is an interest in and commit- ment to enhancing access and use in order to maximize addressing impor- tant issues while ensuring that confidentiality agreements are honored and the risk of personal identification is minimal. Linkages between spatial and social data are being made by researchers at every point in the research enterprise, from primary to secondary use. For example, investigators are specifying designs that incorporate precise coordinate data in the research (e.g., home, workplace, school, recreation center; more than one location) or link to extant databases that provide precise coordinates. Secondary analysts, too, are examining individual-, household-, or group-level behaviors by using data that have those links or by enhancing those data through integrating additional resources. Even in the absence of precise spatial data, the merger of two deidentified databases or one set of public records and one or two deidentified databases raises the possibility of the reidentification of research participants. Identification is even more likely when highly refined locational data are in the mix and are intended to be used as analytic variables. The data producer and user face particularly challenging circum- stances when they generate new data or pursue data integration, analysis, dissemination of results, and sharing or transferring of these data to oth- ers. The archivist and the database manager also have responsibilities for how such data are to be preserved, stored, and potentially used.16 Finally the secondary analyst has the ethical responsibility to honor agreements for access, which include those agreements made with research partici- pants as to use. Purposive Planning From the vantage of human research protection and review of research by an institutional review board, there are some immediate ethical ques- tions 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) and the risks of their occurrence are minimal (through strong data protection or access plans). A primary data producer and user can consider most of these issues in ad-
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133 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA vance of initiating research or can specify them for follow-up review, up to and including strategies for data dissemination and sharing. The secondary analyst does not create the data or the conditions for the research; nevertheless, she or he needs to develop a research plan consonant with confidentiality protections and needs to seek IRB review to the extent that the new work contemplates the integration of heretofore unlinked datasets or spatial measures.17 In the case of secondary data, the data archivist, data collector, or initial researcher can require licensing or other contractual arrangements with the secondary user or her or his institution, or the secondary user may need to work in a data enclave or other restricted-access environment in order to use the data. Each of these steps adds a level of review as a condition of access, controls the nature of that access, and includes the force of law to enhance confidentiality protections (see National Research Council, 2000, 2005).18 The extent to which such steps are necessary or appropriate depends on whether there is more than a minimal risk of disclosure and the probability of harm that any disclosure could entail. Ethically responsible conduct in the collection or use of social and spatial data is sufficiently complex that it requires a planned, deliberative process. One useful way to think about the preparation of a protocol for review by an IRB, as well as the review process itself, is as a structured opportunity for primary researchers or secondary analysts to present to a group of peer scientists and community members a human research protec- tion plan and approaches for undertaking sound and ethically responsible work. Because of the challenging issues involved in human research protec- tion with social and spatial data, there are core ethical questions that need to be addressed: Is this human subjects research? Does the use of precise coordinate data add value to the topic under study? What is the process for gaining consent or the rationale underlying a request for a waiver of con- sent? How are issues of confidentiality to be addressed? What are the benefits of the research, and what are the risks of harm and strategies for amelioration? Each of these issues is considered in the next section. 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 re- search; judging the risks and benefits of certain research topics; and sorting out issues of confidentiality, data access, and data sharing. Fundamental to weighing how research can be done, how research data can be secured, and
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149 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA ally require that all human research receive IRB consideration, whether or not the work is extramurally funded, or whether it is funded by federal agencies (beyond the 17 signatories) or private foundations. 8. Calls for empirical research on human research ethics have increased in recent years. There is general awareness that human research considerations are shaped by too many assumptions about research participants (see, e.g., Levine and Skedsvold, 2007). Recent reports from the National Research Council addressed to issues of data access are strong in their calls for research (see, e.g., National Research Coun- cil, 2005, 2003a). In 2006, the Journal of Empirical Research on Human Research Ethics, published by the University of California Press, was established to serve as a forum for empirical research on such issues. 9. Research, for example, that graphically displayed individual-level activity patterns— leaving from home to work but stopping to have coffee with friends rather than to arrive promptly for business meetings—could encroach on personal privacy and run employment risks if confidentiality were breached. 10. For brief recent histories relating to the social and behavioral sciences generally, see National Research Council (2003a); also see the section on emergence of ethical considerations and related cites in Levine and Skedsvold (2007). 11. Respect for persons, risk-benefit, and justice are key considerations as they relate to the autonomy of subject populations to participate in research and to ensure that their doing so is equitable in terms of inclusion as well as exclusion. For an impor- tant example of attention to ethical considerations in the conduct of research involv- ing prisoners, see Institute of Medicine (2007). The committee undertaking this report sought to reexamine and address such important issues as what constitutes prisoner populations, whether review of research should shift from categories of research to a risk-benefit approach, and how justice might best be understood in the context of an ethical framework. 12. Private information is one of the defining characteristics of research involving hu- man subjects at 45 CFR 46.102(f); that is, information obtained in a context in which an individual might reasonably expect that no observation or recording is taking place or information that a person would reasonably expect will not be made public and is individually identifiable by the researcher. Subsequently, in setting forth the criteria for IRB approval of research at 45 CFR 46.111(a)(7), the need for provisions to protect the privacy of subjects and the confidentiality of data is em- phasized. Confidentiality is also explicitly mentioned in the federal regulations at 46.116(a)(7) as an element of informed consent—that is, the need for informed consent to address the extent to which the confidentiality of records identifying research participants will be maintained. 13. Privacy and confidentiality are distinct from anonymity, which generally refers to researchers retaining no record of the identity of research participants, either be- cause unique identifiers are unknown to the researcher or they are not included as part of the data. For an accessible discussion of the distinction between privacy, confidentiality, and anonymity, see Sieber (1992:44-45). Some researchers and sec- ondary analysts use the term “anonymization” to refer to the removal or alteration of identifiable information—although deidentification tends to be the preferred term to refer to eliminating or masking data to reduce the likelihood of potential disclo- sure (see National Research Council, 1993). 14. Gutmann et al. (2005:2) made this useful distinction between the identity of subjects and information about them in the context of providing spatial data for secondary analysis. For a general discussion of identity disclosure and attribute disclosure, see National Research Council (2003:23-24, 143-144).
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150 APPENDIX B 15. Ethical considerations in biomedical and behavioral research evolved first in the context of experimental research, including in clinical medicine, which put greater emphasis on subject recruitment, consent to participate, and benefits or risks of harm due to participation than on other phases of research—including data preser- vation, dissemination, access, or subsequent use. The National Research Council reports (1985, 1993, 2000, 2005) on data sharing and on access to research data— in particular public data and administrative files—are an exception to the dominant attention to the data collection stage. 16. Excellent suggestions are outlined in Gutmann et al. (2005). 17. IRBs at some institutions want to review research on extant data resources that include identifiable information even if the data are made available by third-party providers who have protocols and procedures in place for approving use. 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. 18. For a recent description of ways in which data enclaves and other forms of limited access data sharing can be employed to permit qualified secondary users to analyze data with strict safeguards against disclosure of confidential information, see Rodgers and Nolte (2006). 19. The scope of this paper is directed to social and spatial research directed to produc- ing and adding to generalizable knowledge. The definition of what constitutes re- search covered by the Code of Federal Regulations for the Protection of Human Subjects is set forth in 45 CFR 46.102(d), “Research means a systematic investiga- tion, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge. . . .” 20. According to 45 CFR 46.102(f), “Private information must be individually identifi- able (i.e., the identity of the subject is or may readily be ascertained by the investiga- tor or associated with the information) in order for obtaining the information to constitute research involving human subject.” 21. Increasingly IRBs at institutions are not doing additional review of protocols for research on public use files. For an excellent example, see the website of the Univer- sity of Wisconsin, Madison, IRB at http://www.grad.wisc.edu/research/compliance/ humansubjects/7.existingdata.htm. More generally, see the recommendation of the National Human Research Protections Advisory Committee on public use data files at http://www.hhs.gov/ohrp/nhrpac/documents/dataltr.pdf). Two NRC reports (Na- tional Research Council, 2003, Recommendations 5.2 and 5.3; 2005, Recommen- dation 6) urge the exemption of secondary analysis of public use files from addi- tional IRB review based on certification of confidentiality protection from a data provider, including federal statistical agencies. The federal regulations at 45 CFR 46.101(b)(4) define as exempt “research involving the collection or study of existing data, documents, records . . . , if these sources are publicly available or if the information is recorded by the investigator in such a manner that subjects cannot be identified, directly or through identifiers linked to the subjects.” 22. Empirical research on the complexity of undertaking research in traumatic circum- stances or on traumatized populations is reviewed in Newman and Kaloupek (2004) and Newman, Risch, and Kassam-Adams (2006); see also, Griffin, Resick, Waldrop, and Mechanic (2003). 23. With certain topics of research or subject populations, researchers need to take special care to conceive of the research cognizant of the perceptions of human subjects about the study and the research procedures being used. There are many
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151 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA good examples related to ethic and cultural populations and communities, including immigrant and refugee groups, in Trimble and Fisher (2006). 24. Since spatial data with precise coordinates by definition locate persons and their communities, community consultation about the consent process and informing com- munities about the research and its purposes may help to work out agreements (see, e.g., Melton et al., 1988; Marshall and Rotimi, 2001). 25. Because precise spatial data are the equivalent of personal identifiers or close prox- ies for them, social and spatial research that includes such measures would typically require research participant consent. Unlike the completion and return of a survey, for example, that is completed online or received in the mail, for which executing the task can be presumed to be consent, collecting coordinate data at a person’s home, workplace, or health clinic and recording or linking it to survey or social data would ethically require the knowledge and agreement of the persons potentially under study. 26. The criteria for waivers of informed consent are set forth in 45 CFR 46.116(d). 27. An IRB is likely to expect researchers to address what information will be conveyed to research participants about spatially explicit data and how they would be com- bined with other information collected in the study. An IRB is most likely to expect discussion of this linkage and any risk of disclosure when locational data are being obtained as part of a primary data collection, along with survey or other social data. The actual wording of such an informed consent process and how it is understood by potential subjects would, in accordance with ethical principles, be specified by the researcher, with explanation to the IRB as to why the information and the assurances are being presented in that format, the data protection plan to be put in place, and the level of risk of harm. Survey researchers know that some wordings of warnings raise undue alarm, erode willingness to participate in research, can skew the research sample, or may be misunderstood or not even be recognized, as when research participants sign a consent form without reading it. 28. There is some evidence that people want their data shared if it is likely to benefit society and if risk to the research participant is minimal (see, e.g., Willison, 2003). 29. The “idealized type” of human subject is a person of value in terms of community norms of decency and trustworthiness. Like other areas of inquiry, social and spatial research may focus on undesirable or unsavory persons (for example, a study of diffusion of fraudulent medical practices among physicians). The ethical obligation to be respectful of research participants and not to increase their vulnerability is part of the consent agreement. There are limitations to agreements relating in some instances to a duty to report (e.g., learning about identifiable child abuse) that need to be made clear to human subjects as part of gaining their informed consent (see the discussion of research populations in Levine and Skedsvold, 2007). 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). “Harm” refers to potential adverse consequences and “risk” refers to the likelihood of their occurrences. There are standards for minimal risk implied in codes of ethics and enunciated explicated in 45 CFR 46.102(i) that set forth that the “probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the perfor- mance of routine physical or psychological examinations or tests.” While this defini- tion offers rules of thumb, in no area does it provide the empirical clarity that would be useful (see also Wendler et al., 2005).
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152 APPENDIX B 31. For useful general recommendations on confidentiality and research data protec- tions, see the National Human Research Protections Advisory Committee (2002). 32. Certificates of confidentiality are issued by designated federal agencies to protect the privacy of research subjects by protecting investigators and institutions from being compelled to release information that could be used to identify subjects with a research project. They allow the investigator and others who have access to research records to refuse to disclose identifying information in any civil, criminal, adminis- trative, legislative, or other proceeding, whether at the federal, state, or local level (see, e.g., the National Institutes of Health web site at http://grants1.nih.gov/grants/ policy/coc/background.htm). 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. 33. Dual-use research is of major concern in the biological sciences. As defined in the National Security Advisory Board for Biosecurity Charter, dual use refers to “bio- logical research with legitimate scientific purpose that may be misused to pose a biologic threat to public health and/or national security” (Shea, 2006:. CRS-2). 34. Certificates of confidentiality vary in their reach and protection, and the need to strengthen or align them across federal agencies is generally recognized (see Na- tional Human Research Protections Advisory Committee, 2002). 35. Fienberg (2004) makes the point that protecting confidentiality is not synonymous with ethical behavior. 36. See section 7 on ethics in reporting in American Educational Research Association, (2006). 37. Ethical decision making can require consulting with expert peers to ensure that steps are taken in publications or presentation that do not compromise research partici- pants but do so with a presumption that openness in research dissemination is optimal for transparent and well-warranted reporting. Other areas of science also face the challenge of how to maximize openness in research reporting while remain- ing sensitive to potential risks of harm. Some of the current discussion in the life sciences about the reporting of results consonant with concerns about security issues is a new domain deeply engaged in trying to understand how best to balance both ethical considerations (see, e.g., Vest, 2003; Somerville and Atlas, 2005). 38. For one of the earliest and most profound statements of the norms guiding science (originally published in 1942), see Merton (1973). 39. There was some early attention in the 1970s to issues of access to government data and the conditions for dissemination of microdata sets (including attention to link- ages to survey data) in a report of the American Statistical Association (1977). See also the Bellagio principles, which were developed in 1977 at a conference of aca- demic and government representatives from five countries (Canada, the United States, the Federal Republic of Germany, Sweden, and the United Kingdom) con- vened to consider privacy, confidentiality, and the use of government microdata for research and statistical purposes. The principles call for expanded access to the research and statistical community and also addressed issues of data linkage conso- nant with confidentiality protections (see Flaherty, 1978). 40. Also for an overview of the emergence of data sharing as a practice integral to the openness of science, see Sieber (1991). In recent years, the biological sciences have also been grappling with the principles underlying the sharing of data and software as well as materials related to publication. Based on discussion at a workshop, the National Research Council Committee on Responsibilities of Authorship in the Bio- logical Sciences articulated recommendations for sharing publication-related prod-
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153 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA ucts that are familiar in tone and substance to those specified in the social and behavioral sciences (see National Research Council, 2003b). 41. The National Science Foundation first specified a data sharing requirement agency- wide in April 1989. The current statement of NSF policy on Dissemination and Sharing of Research Results (section 734) is in the Grant Policy Manual at http:// www.nsf.gov/pubs/manuals/gpm05_131/gpm05_131.pdf. 42. NIH issued Data Sharing Policy and Implementation Guidelines for grants of $500,000 or more annually in direct costs, which is available: http://grants.nih.gov/ grants/policy/data_sharing/data_sharing_guidance.htm. 43. See, e.g., Frequently Asked Questions at http://grants1.nih.gov/grants/policy/data_ sharing/data_sharing_faqs.htm; Data Sharing Workbook at http://grants1.nih.gov/ grants/policy/data_sharing/data_sharing_workbook.pdf; Data Sharing Regulations/ Policy/Guidance Chart for NIH Awards at http://grants1.nih.gov/grants/policy/data_ sharing/data_sharing_chart%20.doc; Data Sharing Brochure at http://grants1.nih. gov/grants/policy/data_sharing/data_sharing_brochure.pdf. 44. Helpful guidance is provided in Duncan (2003); see also O’Rourke et al. (2006). In addition, Expanding Access to Research Data: Reconciling Risks and Opportunities (National Research Council, 2005) specifically addresses a range of approaches to allowing greater access to federally collected data while strengthening confidential- ity protections. The NIH documents also provide useful elaboration on consider- ations that can guide the development of data access and data sharing plans. 45. See, e.g., the ICPSR Responsible Use Statement at http://www.icpsr.umich.edu/org/ policies/respuse.html. 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. See the National Institutes of Health Data Sharing Policy and Implementation Guidelines at http://grants.nih.gov/grants/policy/ data_sharing/data_sharing_guidance.htm. 47. The National Longitudinal Study of Adolescent Health (Add Health) is a good example of a major nationally representative longitudinal study that provides poten- tial users with straightforward information on available public-use data sets and restricted-use data sets, with spatial analysis data being available through restricted use. Access to restricted use data requires an IRB-approved security plan and agree- ment to a data-use contract (Requirements for access to Restricted-Use Contractual Data are described at http://www.cpc.unc.edu/projects/addhealth/data/restricteduse.) Educative guidance of steps to avert deductive disclosure is provided on the Add Health website at http://www.cpc.unc.edu/projects/addhealth/data/dedisclosure. The Project on Human Development in Chicago Neighborhoods, also a major longitudi- nal, multimethod study, has public-use files and restricted data available through the Inter-university Consortium for Political and Social Research. Precise locational data are considered sensitive information and obtainable through ICPSR’s restricted- use agreement or secure data enclave (see http://www.icpsr.umich.edu/PHDCN/ about.html). 48. Exceptions include National Research Council (2003, 2005), which could be adopted in course and class. Also, for useful background texts, see Sieber (1992) and Fisher (2003). 49. The Center for Spatially Integrated Social Science (CSISS) at the University of Cali- fornia, Santa Barbara undertakes a valuable range of activities to foster capacity building in researchers, including workshops, extensive bibliographic references, course syllabi, information on best practices, and so forth (see http://www.csiss.org/). The syllabi included on the website for courses taught on spatial analysis at different
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154 APPENDIX B institutions make no mention of ethical considerations. The CSISS also produced a very informative best practices volume in 2004 (Goodchild and Janelle, 2004). This book is directed to the potential value of thinking spatially and sets forth examples of spatial analysis, but there was no attention to ethical considerations for potential researchers or data analysts. 50. The University of Chicago Social and Behavioral Sciences IRB emphasizes education and provides useful educational resources (see http://humansubjects.uchicago.edu/ sbsirb/education.html). Also, its IRB & Investigator Manual (see http://human subjects.uchicago.edu/sbsirb/manual/sbsirb_manual.pdf) is a very helpful document for both those preparing research and reviewing protocols. 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. See Required Education in the Protection of Hu- man Research Participants at http://grants.nih.gov/grants/guide/notice-files/NOT-OD- 00-039.html; also see Frequently Asked Questions for the Requirement for Education on the Protection of Human Subjects at http://grants.nih.gov/grants/policy/hs_educ_ faq.htm. Although a good deal of information is offered on the website, the number and range of opportunities for training are quite limited, in particular for research grounded in the social and behavioral sciences. 52. See Public Health Service Policies on Research Misconduct, 42CFR Parts 50 and 93, at http://ori.dhhs.gov/documents/42_cfr_parts_50_and_93_2005.pdf. 53. Training in the responsible conduct of research was an element of National Re- search Service Award (NRSA) institutional research training grants (T32) prior to 2005, but attention to research conduct as part of institutional assurances height- ened attention to this component: “Every predoctoral and postdoctoral NRSA trainee supported by an institutional research training grant must receive instruction in the responsible conduct of research. (For more information on this provision, see the NIH Guide for Grants and Contracts, Volume 21, Number 43, November 27, 1992, available: http://grants.nih.gov/grants/guide/notice-files/not92-236.html.) Ap- plications must include a description of a program to provide formal or informal instruction in scientific integrity or the responsible conduct of research. . . .” 54. The mission of the Office of Research Integrity is to monitor institutions’ investiga- tions of research misconduct and promote the responsible conduct of research through education, prevention, and regulatory activities (see http://ori.dhhs.gov/). 55. This portion of the website is operated by the Committee on Privacy and Confiden- tiality of the American Statistical Association; see http://www.amstat.org/comm/ cmtepc/index.cfm?fuseaction=main. 56. For further information on the working group and its educational activities, see http://www.aera.net/Default.aspx?id=669. 57. Organizations that serve as archives for data resources and stewards providing ac- cess for their use offer materials that serve to educate and inform researchers and secondary analysts about the ethical as well as technical issues involved in sharing and gaining access to data (see, e.g., ICPSR Responsible Use Statement at http:// www.icpsr.umich.edu/org/policies/respuse.html). Also, the Henry A. Murray Re- search Archive of the Harvard-MIT Data Center is the repository for qualitative and quantitative research data at the Institute for Quantitative Social Science. It has materials on data archiving that offer brief guidance, from data collection through transfer to an archive, and on steps to facilitate data sharing (see http://murray. harvard.edu/mra/service.jsp?id=55&bct=dData%252BPreservation.p5.s55) or appli- cation for data use (see http://www.murray.harvard.edu/mra/showcontent.jsp?key= DATA_APPLICATION_FORM). The guidance sets forth conditions for use of vari- ous forms of data, including video and audio recordings.
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155 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA 58. One useful example of an accessible educative document is U.S. General Accounting Office (2001). 59. A similar approach was discussed by F.J. Levine regarding natural and humanitar- ian disasters and strategies for ongoing flexible review processes (see National Re- search Council, 2002). REFERENCES American Anthropological Association 1998 Code of Ethics. Arlington, VA: American Anthropological Association. American Association for Public Opinion Research 2003 Protection of Human Participants in Survey Research: A Source Document for Institutional Review Boards. Available: http://www.aapor.org/default.asp?page=news_and_issues/aapor_statement_ for_irb. [accessed November 25, 2005]. 2005 Code of Professional Ethics and Practices. Available: http://www.aapor.org/pdfs/ AAPOR_Code_2005.pdf [accessed November 25, 2005]. American Educational Research Association 2006 Standards for reporting on empirical social science research in AERA publica- tions. Educational Researcher 35(6):33-40. American Political Science Association 1998 A Guide to Professional Ethics in Political Science. Washington, DC: American Political Science Association. American Psychological Association 2003 Ethical principles of psychologists and code of conduct. American Psychologist 57:1060-1073. American Sociological Association 1997 Code of Ethics. Washington, DC: American Sociological Association. American Statistical Association 1977 Report of ad hoc committee on privacy and confidentiality. The American Statis- tician 31(2):59-78. 1999 Ethical Guidelines for Statistical Practice. Alexandria, VA: Author. Armstrong, M.P., G. Rushton, and D.L. Zimmerman 1999 Geographic masking health data to preserve confidentiality. Statistics in Medi- cine 18:497-525. Association of American Geographers 1998 Statement on Professional Ethics. Available: http://www.aag.org/publications/ other%20pubs/ethicsstatement.html [accessed November 25, 2005]. Collogan, L.K., F. Tuma, R. Dolan-Sewell, S. Borja, and A.R. Fleischman 2004 Ethical issues pertaining to research in the aftermath of disaster. Journal of Traumatic Stress 17:363-372. Collogan, L.K., F.K. Tuma, and A.R. Fleischman 2004 Research with victims of disaster: Institutional review board considerations. IRB: Ethics & Human Research 26(July-August):9-11. de Wolf, V.A. 2003 Issues in accessing and sharing confidential survey and social science data. Data Science Journal 2:66-74. de Wolf, V.A., J.E. Sieber, P.M. Steel, and A.O. Zarate 2006 Part II: HIPAA and disclosure risk. IRB: Ethics & Human Research, 28(January-February), 6-11.
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156 APPENDIX B Duncan, G.T. 1993 Special issue on confidentiality and data access. Journal of Official Statistics 93:269-607. 2003 Confidentiality and data access issues for institutional review boards. Pp. 235- 247 in National Research Council, Protecting Participants and Facilitating So- cial and Behavioral Sciences Research. C.F. Citro, D.R. Ilgen, and C. B. Marrett, eds. Panel on Institutional Review Boards, Surveys, and Social Science Research. Washington, DC: The National Academies Press. Fienberg, S.E. 2004 Confidentiality in Geo-Spatially-Linked Data: How Robust Are the Solutions? Presentation at the Workshop on Confidentiality Issues in Linking Geographi- cally Explicit and Self-Identifying Data, The National Academies, Washington, DC, December 9-10. Fisher, C.B. 2003 Decoding the Ethics Code: A Practical Guide for Psychologists. Thousand Oaks, CA: Sage Publications. Flaherty, D.H. 1978 Report of the Bellagio conference. Journal of the Royal Statistical Society. Series A (General) 141:401-405. Golden, M.L., R.R. Downs, and K. Davis-Packard 2005 Confidentiality Issues and Policies Related to the Utilization and Dissemination of Geospatial Data for Public Health Applications. A report to the Public Health Applications of Earth Science Program, National Aeronautics and Space Admin- istration, Science Mission Directorate, Applied Sciences Program. Prepared by the Socioeconomic Data and Applications Center, Center for International Earth Science Information Network, Columbia University, March 2005. Available: http://www.ciesin.columbia.edu/pdf/SEDAC_ConfidentialityReport.pdf [accessed November 25, 2005]. Goodchild, M.F., and D.G. Janelle, eds. 2004 Spatially Integrated Social Science. New York: Oxford University Press. Griffin, M.G., P.A. Resick, A.E. Waldrop, and M.B. Mechanic 2003 Participation in trauma research: Is there evidence of harm? Journal of Trau- matic Stress 16:221-227. Gutmann, M., K. Witkowski, C. Colyer, J.M. O’Rourke, and J. McNally 2005 Providing Spatial Data for Secondary Analysis: Issues and Current Practices Re- lating to Confidentiality. Unpublished manuscript, Inter-university Consortium for Political and Social Research, University of Michigan (available from Myron Gutmann). Institute of Medicine 2007 Ethical Considerations for Research Involving Prisoners. Committee on Ethical Considerations for Revisions to DHHS Regulations for Protection of Prisoners Involved in Research, L.O. Gostin, C. Vanchieri, and A. Pope eds. Washington, DC: The National Academies Press. Iutcovich, J.M., J.M. Kennedy, and F.J. Levine 2003 Establishing an ethical climate in support of research integrity: Efforts and ac- tivities of the American Sociological Association. Science and Engineering Ethics 9:201-205. Kwan, M.P., I. Casas, and B.C. Schmitz 2004 Protection of geoprivacy and accuracy of spatial information: How effective are geographical masks? Cartographica 39:15-28.
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157 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA Kwan, M.R., and J. Lee 2004 Geovisualization of human activity patterns using 3D GIS. Pp. 18-66 in M.F. Goodchild and D.G. Janelle, eds., Spatially Integrated Social Science. New York: Oxford University Press. Lane, J. 2003 Key Issues in Confidentiality Research: Results of an NSF Workshop. Available: http://www.nsf.gov/sbe/ses/mms/nsfworkshop_summary1.pdf [accessed Novem- ber 25, 2005]. Levine, F.J., and J.M. Iutcovich 2003 Challenges in studying the effects of scientific societies on research integrity. Science and Engineering Ethics 9:257-268. Levine, F.J., and P.R. Skedsvold 2007 Behavioral and social science research. In E.J. Emmanuel, R.A. Crouch, C. Grady, R. Lie, F. Miller, and D. Wendler (Eds.) The Oxford Textbook of Clinical Re- search Ethics. Oxford, England: Oxford University Press. Marshall, P.A., and C. Rotimi 2001 Ethical challenges in community-based research. American Journal of the Medi- cal Sciences 322(5):241-245. Melton, G.B., R.J. Levine, G.P., Kocher, R Rosenthal, and W.C. Thompson 1988 Community consultation in socially sensitive research: Lessons from clinical tri- als on treatments for AIDS. American Psychologist 43:573-581. Merton, R.K. 1973 The normative structure of science. In R.K. Merton, ed., The Sociology of Sci- ence: Theoretical and Empirical Investigations. Chicago, IL: University of Chi- cago Press. National Bioethics Advisory Commission 2001 Ethical and Policy Issues in Research Involving Human Participants: Vols I, II. Bethesda, MD: National Bioethics Advisory Commission. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979 Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. (GPO No. 887-809). Washington, DC: U.S. Government Printing Office. Also available: http://ohsr.od.nih.gov/guidelines/belmont.html [accessed November 13, 2005]. National Human Research Protections Advisory Committee 2002 Recommendations on Confidentiality and Research Data Protections. Available: http://www.aera.net/aera.old/humansubjects/NHRPAC_Final_ Confidentiality.pdf. National Research Council 1985 Sharing Research Data. Committee on National Statistics, S.E. Fienberg, M.M. Martin, and M.L. Straf, eds. Washington, DC: National Academy Press. 1993 Private Lives and Public Policies: Confidentiality and Accessibility of Govern- ment Statistics. Committee on National Statistics, G.T. Duncan, T.B. Jabine, and V.A. de Wolf, eds. Washington, DC: National Academy Press. 1998 People and Pixels: Linking Remote Sensing and Social Science. Committee on the Human Dimensions of Global Change, D. Liverman, E.F. Moran, R.R. Rindfuss, and P.C. Stern, eds. Washington, DC: National Academy Press. 2000 Improving Access to and Confidentiality of Research Data: Report of a Work- shop. Committee on National Statistics, C. Mackie and N. Bradburn, eds. Wash- ington, DC: National Academy Press.
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158 APPENDIX B 2002 Research Ethics in Complex Humanitarian Emergencies: Summary of a Work- shop. H, Reed, Rapporteur, Roundtable on the Demography of Forced Migra- tion, Committee on Population. Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press. 2003a Protecting Participants and Facilitating Social and Behavioral Sciences Research. Panel on Institutional Review Boards, Surveys, and Social Science Research, C.F. Citro, D.R. Ilgen, and C.B. Marrett, eds.. Washington, DC: The National Acad- emies Press. 2003b Sharing Publication-Related Data and Materials. Committee on Responsibilities of Authorship in the Life Sciences. Washington, DC: The National Academies Press. 2005 Expanding Access to Research Data; Reconciling Risks and Opportunities. Panel on Data Access for Research Purposes, Committee on National Statistics. Wash- ington, DC: The National Academies Press. National Science Foundation, Division of Social and Economic Science 1986 Data Archiving Policy and Implementation Guidance. Materials available from F.J. Levine at firstname.lastname@example.org. Newman, E., and D.G. Kaloupek 2004 The risks and benefits of participating in trauma-focused research studies. Jour- nal of Traumatic Stress 17:383-394. Newman, E., E. Risch, and N. Kassam-Adams 2006 Ethical issues in trauma-related research: A review. Journal of Empirical Re- search on Human Research Ethics 1(3):29-46. O’Rourke, J., S. Roehrig, S. Heeringa, B. Reed, W. Birdsall, M. Overcashier, M., and K. Zidar 2006 Solving problems of disclosure risk while retaining key analytic uses of publicly released microdata. Journal of Empirical Research on Human Research Ethics 1(3):63-84. Rindfuss, R.R., and P.C. Stern 1998 Linking remote sensing and social science: The need and the challenges. Pp. 1-27 in National Research Council, People and Pixels: Linking Remote Sensing and Social Science. Committee on the Human Dimensions of Global Change, D. Liverman, E.F. Moran, R.R. Rindfuss and P.C. Stern, eds. Washington, DC: National Academy Press. Rodgers, W., and M. Nolte 2006 Disclosure review procedures in an academic setting: Example of the Health and Retirement Study. Journal of Empirical Research on Human Research Ethics 1(3):85-98. Shea, D.A. 2006 Oversight of Dual-Use Biological Research: The National Science Advisory Board for Biosecurity. (CRS Report No. RL33342). Washington, DC: Congres- sional Research Service. Sieber, J.E. 1991 Introduction: Sharing social science data. In J.E. Sieber (Ed.), Sharing Social Science Data: Advantages and Challenges. Newbury Park, CA: Sage Publica- tions. 1992 Planning Ethically Responsible Research: A Guide for Students and Internal Review Boards. Newbury Park, CA: Sage Publications. Somerville, M.A., and R.M. Atlas 2005 Ethics: A weapon to counter bioterrorism. Science 307:1881-1882.
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159 ETHICAL ISSUES RELATED TO LINKED SOCIAL-SPATIAL DATA Trimble, J.E., and C.B. Fisher 2006 The Handbook of Ethical Research with Ethnocultural Populations and Com- munities, Thousand Oaks, CA: Sage Publications. Urban and Regional Information Systems Association 2003 A GIS Code of Ethics. Available: http://www.urisa.org/ethics/code_of_ethics.htm [accessed August 9, 2005]. U.S. General Accounting Office 2001 Record Linkage and Privacy: Issues in Creating New Federal Research and Sta- tistical Information. (GAO-01-126SP). Washington, DC: U.S. General Account- ing Office. VanWey, L.K., R.R. Rindfuss, M.P. Gutmann, B.E. Entwisle, and D.L. Balk 2005 Confidentiality and spatially explicit data: Concerns and challenges. Proceedings of the National Academy of Sciences 102:15337-15342. Vest, C.M. 2003 Balancing security and openness in research and education. Academe. Available: http://www.aaup.org/publications/Academe/2003/03so/03sowest.htm [accessed January 7, 2006]. Wendler, D., L. Belsky, K.M. Thompson, and E.J. Emanuel 2005 Quantifying the federal minimal risk standard: Implications for pediatric re- search without a prospect of direct benefit. Journal of the American Medical Association 294:826-832. Willis, G. 2006 Cognitive interviewing as a tool for improving the informed consent process. Journal of Empirical Research on Human Research Ethics 1(1):9-23. Willison, D.J. 2003 Privacy and the secondary use of data for health research. Experience in Canada, and suggested directions forward. Journal of Health Services Research and Policy 8(Suppl 1):17-23.
Representative terms from entire chapter: