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OCR for page 123
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
OCR for page 124
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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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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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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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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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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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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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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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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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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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).
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Representative terms from entire chapter:
human research
