From: Graduate Research Ethics: Cases and Commentaries - Volume 7, 2006,
Edited by Brian Schrag
Dr. John McIntosh is a sociologist who examines the online behavior of members of virtual communities on the Internet. Roger Higgins is his graduate student research assistant. Dr. McIntosh intends to seek IRB approval for a new study he plans to conduct during the next year. This ethnographic study will evaluate how members of an Internet support group for a chronic illness establish, as well as learn, new formal and informal social norms for participation within that group. Dr. McIntosh and Roger will use social network analysis techniques to examine online messages posted by members of this virtual community in order to better understand the interaction patterns of its members.
Roger has identified a potential virtual support group to serve as the focus of their study. Known as “Narcolepsy Friends and Families” or NFF, it addresses medical issues associated with the neurological disorder known as narcolepsy, as well as the social stigma that can accompany it. Narcoleptics experience unexpected and uncontrollable episodes of deep sleep and related symptoms. Members of the NFF community often are narcoleptics themselves, or have a close friend or relative with this illness.
Two levels of access to the NFF online community are available: registered members and unregistered guests. NFF registration is open to anyone who wishes to become a member; there are no explicit prerequisites. Registered members of NFF log in to the community web site via a username to post messages, as well as to edit or delete their own prior messages. Additional privileges for registered members include the ability to create a profile that reveals their real name and other identifying information if desired, or simply to use their username as a pseudonym instead. There are approximately 200 registered participants in the community, although only about 80 members post messages regularly.
As with many online support groups, NFF turnover is high since many individual members have joined and then left the community during its five-year history. To facilitate continuity, each message posted on the group’s web site is archived by date as well as topic, and is publicly accessible to unregistered guests without login. Unregistered guests also can conduct keyword searches to locate specific messages, such as information about particular treatment options.
Dr. McIntosh is concerned that if the research team announces its intent to study the NFF virtual community, then members will be aware that their messages are being monitored and may act differently as a result, possibly affecting their research results. He proposes that Roger subscribe to NFF’s online community forum and “lurk” as an invisible presence to gather research data. Roger is uncomfortable with this idea because he thinks that NFF group members should be aware that they are the subjects of an ongoing research study, particularly since their discussions often involve sensitive personal topics. Dr. McIntosh points out that the NFF group does not limit its membership. Therefore, he considers the online community to be a public space so that informed consent is not required.
As an alternative, Dr. McIntosh suggests that Roger capture the NFF community’s public messages posted on its web site during the previous year and use them as research data instead. To determine the feasibility of this approach, Roger contacts Wayne, the NFF forum’s moderator, and asks whether it is possible to download a year’s worth of messages in bulk format from the web server where they are stored. However, Wayne declines to help him unless he seeks permission from the entire NFF support group first. Wayne acknowledges that archived NFF postings are public, but contends that participants did not expect their messages to be used for research purposes at the time they originally were posted. He adds that most participants are unaware that their postings are publicly available, and view their messages to other members as private communications within the NFF group environment.
Dr. McIntosh and Roger decide to post a message to the NFF community to inform them that they would like to conduct research on NFF’s activities during the next year. In this message, they will offer to answer questions regarding the scope of their project, and ask for input in the study’s design. Roger and Dr. McIntosh will explain that NFF participants will be able to opt out at any time. The researchers also will promise that personal information will be kept confidential, and that individual identities will remain anonymous in published materials. They will assure NFF members that sensitive postings will not be quoted in detail in published reports without specific permission to do so.
However, Dr. McIntosh is concerned that it will be difficult to contact all 200 registered members of NFF since they are not required to provide an e-mail address in order to participate. In addition, many members may have changed e-mail addresses within the past five years, but not updated their profiles with their new addresses. In their initial posted message, Dr. McIntosh and Roger plan to suggest that current NFF support group members vote as to whether to participate. If a favorable consensus emerges, then Roger will post an informed consent form on the group’s website for willing members to download, complete, and submit via e-mail.
Posted 3 years and 3 months ago
This case raises issues in research ethics which are in part old and in part new. On the one hand there is the old issue of whether it is ethically justified to do observational research on “public” human behavior. A newer question is whether listserves on the internet are “public” spaces and whether there are privacy norms that are applicable and place restrictions even in “public” spaces. I will address three issues in this case.
I. Is this Human Subjects Research?
The first issue is whether or not the research proposed in this case is properly classified as human subjects research as defined in the Code of Federal Regulations and therefore falls under the United States guidelines for human subjects research.
In Part 1 of this case, Dr. McIntosh’s first suggestion is that Roger simply lurk on line as an unregistered guest and do his research, since the web site can be accessed by unregistered guests to read current postings and archived postings. Is this human subjects research? The relevant guidelines are found in the Code of Federal Regulations PART 46, PROTECTION OF HUMAN SUBJECTS. (CFR 46.102 (1), (2) provide the definition and (CFR 46.101 (b) (2) (4) identifies the activities that are exempt from human research guidelines. (Code of Federal Regulation)
Consider first the definitions of human subjects research in the Code of Federal Regulation. (PART 46, PROTECTION OF HUMAN SUBJECTS §46.102 Definitions):
(f), Human subject means a living individual about whom an investigator (whether professional or student) conducting research obtains
(1) Data through intervention or interaction with the individual, or(2) Identifiable private information.
Intervention includes both physical procedures by which data are gathered (for example, venipuncture) and manipulations of the subject or the subject's environment that are performed for research purposes. Interaction includes communication or interpersonal contact between investigator and subject. Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public (for example, a medical record). Private information must be individually identifiable (i.e., the identity of the subject is or may readily be ascertained by the investigator or associated with the information) in order for obtaining the information to constitute research involving human subjects.
In Part I, if Roger merely lurks on line, observing postings or looking at archived postings, there is presumably no interaction between Roger and the members of the group; neither is there any intervention since he is not manipulating the subject or the subjects’ environment. The information Roger would obtain is available to anyone who accesses the web site as an unregistered guest. It is reasonable to say the information is as public as that in a daily newspaper. Given these considerations, it is reasonable to say that the research proposed in Part 1 does not constitute Human Subjects research under the U. S. Code of Federal Regulations.
In Part 2, an alternate proposal to download only the site’s archived messages posted the previous year is considered. The forum moderator indicates that participants did not expect at the time of posting that their messages would be used for research purposes; that most participants were unaware that their postings are publicly available and that they view their messages as private communications to other members of the NFF forum. The moderator will only help Roger if Roger first seeks permission from the entire NFF support group.
The fact that participants are unaware that their postings are publicly available and that they consider them private, does not change the status of the research under the definition. This research still does not fall under the definition of Human Subjects research. For a systematic discussion of what counts as human subjects research on the internet under the Code of Federal Regulation see (Walther).
In Part 3, Roger decides to post a message to the community to inform them that he would like to conduct research on NFF’s activities during the next year. At that point Roger has begun to interact with the group. By making the group aware that it is possible for them to be monitored, Roger has destroyed their illusion that this is a private space and may make them self-conscious about their postings. In that sense, Roger has intervened in the group and perhaps already altered the group behavior, whether or not they give him permission to proceed. If they consent to the research, the same research activity which did not previously fall under the definition of Human Subjects research certainly does now.
Impact of human subjects research on group functionThe primary function of this website is to provide mutual support for a group of persons who are concerned with a disorder which is surely distressing to those who have it or those with a loved one with the disorder and all of whom are aware of the social stigma associated with the disorder. Their focus is understandably on that situation and they may deliberately keep access boundaries minimal in order to encourage those who seek support to join in. Their focus is thus inward on their group, not a wider public of strangers scrutinizing their every word. It is not credible to assume group participants would not be affected by the realization that a complete stranger was observing them and reporting their interactions to a larger world of strangers. In this sense, this particular group differs from other groups such as those involved in Face Book where participants assume that what they write is for a wider public.
Thus one effect Roger and his mentor may have in doing their study of this group as proposed in Part 3 is to undermine the function of the group. The group has been created as a support group. That presupposes its members share a common concern and develop a certain trust and a climate of mutual support among the members. It has to be disruptive to be aware that a stranger, who does not share those concerns, is observing and at some point reporting their interactions. (Elgesem) That is so whether their anonymity is protected or not. (Imagine the impact on group dynamics if an Alcoholics Anonymous group was aware that a researcher was sitting in on their meeting and would be reporting their discussions and interactions to a wider audience.)
Undermining this narcolepsy group’s function as a support group is a moral harm. How does Roger justify the moral harm done to this group in order to observe them? What is the research value of this study that is so important that it justifies undermining the very purpose of the group’s existence, especially since there may be many other groups Roger could study for which this is not a consideration?
Is this research subject to research guidelines of other countries?Although it is understandable to approach this case from the perspective of the U.S. Code of Federal Regulation, it is worth noting that since postings in this case could have been made by citizens in other countries, (and Roger has no way of knowing the background of the group) it is quite possible that participant’s perceptions of the ethical acceptability of “research by lurking” and the research guidelines of those countries having to do with invasion of privacy in research on human subjects could be quite different than that reflected in the U.S. Code. It is worth noting that European research guidelines are much more inclined to assume a deontological emphasis on rights of individuals and not (as does the U.S. code) allow utilitarian considerations of benefits to others to override those values (Ess).
Is this Observation of Internet Behavior, the Observation of Public Behavior?Whether the research proposed in either Part 1 or Part 3 of this case falls under the definition of Human subjects research is one issue. However, even if, in Part 3 of the case, the research does fall under the definition of Human Subjects research, it may be exempt from humans subjects research guidelines because, it could be argued, it involves observation of “public” behavior.
The exemptions from human subjects research Guidelines are specified in the Code of Federal Regulations §46.101 (b):
§46.101 (Code of Federal Regulation)
(b)…research activities in which the only involvement of research subjects will be in one or more of the following categories are exempt from this policy:
(2) Research involving the use of educational tests (cognitive, diagnostic, aptitude, achievement), survey procedures, interview procedures or observation of public behavior, unless:(i) information obtained is recorded in such a manner that human subjects can be identified, directly or through identifiers linked to the subjects; and (ii) any disclosure of the human subjects' responses outside the research could reasonably place the subjects at risk of criminal or civil liability or be damaging to the subjects' financial standing, employability, or reputation.
(4)Research involving the collection or study of existing data, documents, records, pathological specimens, or diagnostic specimens, 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.
Assuming Roger can protect the identity of persons in the group, then if the behavior being observed is in public or the archives of group discussions are public, then Roger may be exempt from human subjects guide lines and is not required by the regulations to obtain informed consent from the subjects. (I hasten to add that, even if the research is exempt, there may still be good reasons to bring this research before an IRB for their review.)
It is an open question whether, in fact, Roger can protect the identity of the participants in doing this research. Bruckman details just how difficult it is to disguise and protect the identity of subjects in research in this sort of online setting. (Bruckman)
II. Is the Internet in the Public Sphere?
This case raises issues beyond that of simply asking what the Code of Federal Regulations would require of researchers. It raises a new conceptual issue that has implications for this sort of research; that is, should we view the narcolepsy listserve as a public space or public sphere? For the purposes of research ethics, is this listserve a public space, or is it relevantly analogous to a public space, or is it something altogether different? In doing research ethics on the web, it is common to assert an analogy between a public space and space in a public chat room and therefore between observation of subjects in a public sphere and observation of online behavior. (Ess) The issue of whether there is an exemption in this research to human subjects guidelines as discussed above does assume that such spaces on the internet constitute a public space. Is that really so?
If the listserve literally is a public space, then there is a case to be made that ethical guidelines regarding observing human action in that “internet space” is no different than guidelines for observing human behavior in the public square. The behavior is thus public and in that sense “up for grabs.” Anyone is free to observe anyone else in the public square and since a listserve is just a variant on the public square, no listserve participant can complain about being the object of surveillance in that setting.
The paradigm of a public space is a public square, with actual people walking about, observable to all, perhaps with people sitting at open air cafes holding conversations accessible to others at nearby tables. Yet, on the internet, people are not in the same physical location, not in visual contact, perhaps not even in the same temporal coordinates. What is true is that the internet is a “technically accessible medium.” But why should technical accessibility be equated with being in the public space? (Berry, 2004)
Walther, for example, presupposes that a listserve is literally a public space or relevantly analogous to a public space in which participants cannot reasonably expect that what they say and do should be treated as private. As he notes, research use of conversation, if gathered in a publicly accessible venue is not human subjects research by definition and is parallel to recording conversations in a public park. Collection of data which is publicly available is analogous to collecting data from old newspapers or public broadcasts. (Walther, p. 207)
Bruckman, on the other hand, challenges that analogy and argues that our intuitive notions of “public” and “private” in this context can be misleading, and that a web page is neither a public place, like an art gallery nor a private place like one’s home—it is a web page. Bruckman argues that, in thinking about research on the postings on the narcolepsy listserve, rather than invoking the analogy of a person in a public square or public park, perhaps the appropriate analogy is an author of a published work. (Bruckman) Is it conceptually clearer to think of the internet as a “space” in which embodied persons “interact,” or is it conceptually more appropriate to think of the internet as a textual repository where authors deposit their work? (Berry)
It is true that we do argue that a letter to the editor of a newspaper, addressed to fellow citizens is a public document in the “public” sphere. But, in that setting, the letter is intentionally addressed to a wide audience of strangers. How is that comparable to what is written by members of the narcolepsy group? What is distinctive of their writings is that they are written explicitly to their group members who share a fairly narrow set of therapeutic goals; they are not writing to the universe as a whole.
If one thinks of postings on the internet as creative writings of authors, then that shifts the use of those materials from a focus on human subjects research guidelines to the permission of the use of copyrighted material. One effect of that shift in paradigm is to force a recognition that such postings, even if public, are not simply “up for grabs” as taped conversations in the park by the researcher may be, but must be treated as copyrighted material.
It is beyond the scope of this commentary to resolve the issue but perhaps it is enough to raise the issue to caution researchers not to simply assume that the internet is a public space and all the usual understandings regarding doing research in public spaces apply.
III. Is there no privacy in the public sphere?
There is a larger issue that goes beyond the question of whether this research is activity in the public sphere. Suppose we grant for the moment that the activity of the narcolepsy group falls within the category of the public sphere. There is a yet more fundamental question to address. That is the question of whether there can be privacy in the public sphere. That possibility challenges the very presupposition of the conventional public/private distinction.
The conventional wisdom, which underlies longstanding practice in observational research in the social sciences and the Code of Federal Regulation human subjects research guidelines, is as Helen Nissenbaum puts it:
If you have chosen to expose yourself and information about yourself in public view with the result that others have access to you or to information about you without intruding upon your private realm, then any restrictions on what they may observe, record or do with this information cannot be justified. (Nissenbaum, 1998 p. 572)
This is not an issue unique to the internet. In the social sciences, there is a long history of assuming that public behavior is fair game for observational research and that there is implicit consent in a subject’s public behavior that such behavior may be studied by others. Lurking on the internet, in this case, may be no different than anthropologists observing and writing about the behavior of an isolated, indigenous tribe without the tribe’s knowledge or consent or the infamous case of the observational research in the Tearoom Trade case. In all such cases, subjects may be unaware that their public behavior is being recorded and reported to a wider audience of complete strangers.
Nissenbaum and other scholars (Nissenbaum, 97, 98, 2004; Rachels, 1975; Scanlon, 2001; Schoeman, 1984) have begun to challenge this conventional wisdom and argue for a fundamental rethinking of the public/private distinction and argue for the notion of a sphere of privacy in public. Nissenbaum has been at the forefront of that discussion as it relates to the internet.
We cannot rehearse the entire argument for this perspective but the basic argument is this. We all live our lives in multiple contexts, realms or spheres, including such contexts as our work setting, visiting friends, seeking health care, shopping, banking and walking the public streets. Each of these contexts is governed by norms, including norms for the exchange of information. The central point is that there is no place that is not governed by informational norms. The notion that when one ventures out in public no norms are in operation is simply pure fiction.
Nissenbaum posits two forms of informational norms for these contexts. One is a norm of appropriateness. This norm dictates that information which may be appropriate and fitting to reveal in one particular context may not be fitting and appropriate to reveal in another context. The kind of information appropriately shared by a patient with a doctor is not necessarily the kind of information that would be appropriate for a doctor to share about himself with a patient. Information on one’s financial standing may be appropriately shared with a bank but not necessarily appropriately shared by the banker with acquaintances. It is understood to be inappropriate to take information that is appropriate in one context, e.g. revealing information about oneself in a group therapy session and insert it into another context-e.g. a researcher sharing that information in a research project.
The second is a norm for distribution or transfer of information. We recognize that there are norms regarding the flow of information about ourselves. It is expected that if one shares information with a friend, it would be a violation of the norms of friendship for the friend to share that information with strangers. It would be a violation of the norms of support groups if information revealed about oneself in that context were to be transformed by someone else into data for their research paper.
On this view then, as Nissenbaum put it,
personal information revealed in a particular context is always “tagged” with that context and never “up for grabs” as other accounts would have us believe of public information gathered in public places. (Nissenbaum, 2004, p. 121)
It is beyond the scope of this commentary to assess Nissenbaum’s analysis but if her analysis is right, it does help one to see why there may be a difference between information about a person being “technically accessible” on the internet and a researcher being morally justified in appropriating that information. The mere fact that such information is “public” in the sense of “technically accessible” does not justify its acquisition and use by a researcher. That is what is wrong with Roger lurking on line and using the data from the narcolepsy group for his research. That is what is wrong with downloading the archived data without their consent and perhaps what is wrong with him even approaching them for consent. Nissenbaum’s analysis also raises questions about the general practice, particularly in the social sciences, of research involving observation of human behavior in a public setting. None of this is captured by the current Code of Federal Regulations research guidelines and may call into question the adequacy of those guidelines.
This case study highlights several unique challenges posed by conducting social science research on the Internet. Human subjects research generally is governed by those rules contained in 45 C.F.R. § 46 as well as the Belmont Report. In addition, the Office for Human Research Protections of the U.S. Department of Health and Human Services provides a set of flow charts to help principal investigators and IRB administrators determine which regulations apply to a particular research project. Researchers should examine the potential consequences of alternative research designs in terms of their duty to uphold the values of respect, beneficence and justice endorsed in the federal standards.
However, these general principles may not always provide sufficient guidance for researchers who explore the emerging and important area of human behavior in online venues. Some commentators suggest that traditional ethical interpretations may no longer be relevant for Internet research due to technological progress. Others contend instead that existing rules simply need to be updated and augmented by context-specific guidelines. In fact, research in different virtual environments may present different ethical implications, which then require different ethical analyses. As a result, each of the following examples of computer-mediated communication may invoke different fact-specific ethical outcomes:
In 2002 the Ethics Working Committee of the Association of Internet Researchers (AOIR) prepared a set of recommendations to help inform the ethical study of online human interactions. The AOIR code of ethics constitutes a set of professional norms that Internet researchers can consult in conjunction with other ethical guidelines adopted by specific academic disciplines. Since emerging technologies will continue to produce unanticipated ethical challenges, Internet researchers are encouraged to develop an enhanced sense of good judgment to resolve new ethical dilemmas encountered online. Often this means identifying specific points of conflict involved in a particular situation, and then choosing among two or more legitimate yet competing value systems to craft a workable ethical solution.
For example, in Part 1 of this case study Dr. McIntosh views the NFF community as a public arena, while Roger regards it as a private space. Dr. McIntosh initially suggests lurking in the online forum to gather research data. Such behavior presumably would not involve interaction or intervention with living individuals to obtain individually identifiable information. Therefore this version of the project might not be considered human subjects research under 45 C.F.R. § 46 and informed consent might not be needed. Alternatively, even if this project does constitute human subjects research, it may simply involve observing public behavior or collecting existing data. Those activities may qualify for a federal exemption under 45 C.F.R. § 46.101(b)(2) or (b)(4).
Roger nonetheless could argue that some sensitive posted messages might include individually identifiable information. However, gathering individually identifiable information is not considered human subjects research if that material already is public. Thus any ethical analysis must assess whether such messages were considered private when initially posted. In this case it is not stated whether the NFF community web site provides an explicit announcement to members and guests regarding whether it constitutes a private or public space.
Federal regulations indicate that individual participants, rather than researchers, should establish the relevant public/private distinction on a personal basis. According to 45 C.F.R. § 46.102(f)(2):
Private information includes information about behavior that occurs in a context in which an individual can reasonably expect that no observation or recording is taking place, and information which has been provided for specific purposes by an individual and which the individual can reasonably expect will not be made public (for example, a medical record).
However, several commentators have noted that the Internet realm problematizes the traditional division between public and private spaces since an online environment arguably can perform both functions simultaneously. It therefore may be difficult to apply the C.F.R. standards in this complex situation. For example, qualifying for an exemption under 45 C.F.R. § 46.101(b)(4) requires that pre-existing data sources be publicly available, which may not be easy to determine with respect to archived discussion group postings.
A survey of participants’ attitudes in the NFF forum may reveal that it functions as a public sphere. Accordingly, Dr. McIntosh and Roger’s project may be exempt from federal regulation. However, the researchers might apply for IRB approval anyway. For instance, some academic institutions require IRB clearance for all university-affiliated research, even if a project technically does not meet the federal threshold for human subjects research. Moreover, IRBs increasingly are developing expertise in working with Internet researchers. IRB administrators can provide guidance based on past experience with other online projects, such as identifying potential ethical issues implicated by particular research designs. Conversely, researchers may help educate IRB members regarding the complexities of Internet-based research.
As an example, the Belmont Report addresses whether vulnerable populations can comprehend research risks in order to provide voluntary informed consent. In the absence of the face-to-face contact associated with traditional research activities, Dr. McIntosh and Roger’s efforts to screen NFF forum members in order to exclude vulnerable participants might benefit from IRB suggestions based on prior virtual research projects. Alternatively, Dr. McIntosh and Roger could help IRB members develop standards for online informed consent that could apply to future Internet research studies as well.
In Part 2 of the case study, Dr. McIntosh and Roger must evaluate several potential research designs in terms of their obligations to protect the interests of NFF forum participants. According to the federal guidelines, researchers must weigh the risks of each approach against the benefits it offers for participants as well as the general welfare. Online researchers recognize, however, that research methods such as discourse analysis, participant observation, and social network analysis may increase the risk of disclosing identifiable participant information due to the rich descriptions contained in their narrative reports.
The AOIR guidelines suggest a conservative approach that respects forum participants’ assumptions regarding online privacy even though such perspectives may be mistaken or unrealistic. Variables such as the size of the online community involved, as well as the potentially sensitive nature of conversational topics, also may affect participants’ privacy expectations and thus influence the ethical analysis. As a result, IRB feedback could be valuable during this assessment, or perhaps might help generate alternative scenarios that may be more ethically advantageous. However, some commentators contend that IRB members sometimes do not fully understand the complex nature of online research. In fact, in some cases IRBs may seek to impose unreasonable constraints upon Internet researchers.
Since the Internet increasingly is a global environment, online research also may involve cross-cultural perspectives. For example, individual online participants may possess different cultural attitudes regarding the nature and scope of personal privacy. In such cases the question arises as to whose views should govern the analysis.
U.S. regulations such as the Belmont Report and 45 C.F.R. § 46 apply a utilitarian cost/benefit calculus. In contrast, other cultural traditions adopt a more deontological position which asserts that fundamental human rights, including the right to privacy, simply cannot be violated. Furthermore, international regulatory standards such as the European Commission’s Directive on Data Protection potentially may conflict with U.S. mechanisms for protecting the privacy of research participants. As a result, Dr. McIntosh and Roger must address the status of any non-U.S. participants in the NFF online community when considering their responsibilities as researchers.
In Part 3 of the case study, Dr. McIntosh and Roger propose a participatory research design that empowers NFF forum participants as stakeholders in the research process. At the same time, they must decide whether to engage in overt research as opposed to (1) deceptive research with a debriefing component; (2) complete nondisclosure of research activities; or (3) incomplete disclosure of the true nature of their research. In many ways an online environment can facilitate covert research options due to the lack of face-to-face communication. This approach may be advantageous for certain research goals, but must be justified on an ethical basis under the federal guidelines.
The case study indicates that messages posted in the NFF virtual forum are publicly available and searchable. However, forum moderator Wayne confirms that most participants view such messages as private despite their actual public nature. If Dr. McIntosh and Roger offer guarantees of confidentiality, they must then protect the digital data they collect against unauthorized access. For example, they might encrypt data while in transit and also restrict access via a system of passwords. They may choose to store raw data files on a non-networked computer and safeguard individual identifiers on a different machine. In addition, they could develop trustworthy data retention and destruction policies and explain them to participants.
If Dr. McIntosh and Roger include detailed quotes from forum participants in any published materials, they should recognize that readers might be able to use current or future search engine technologies to identify the NFF forum as the source of such information. Thus it may be important not only to shield individual identities by using pseudonyms, but also to mask the online community’s true identity as well. One alternative is to provide an additional layer of anonymity by creating “double pseudonyms” rather than merely relying upon participants’ own online pseudonyms.
Another option is to modify the specific language of quoted material in a manner that reduces the likelihood that it could be traced back to the NFF forum through online search techniques. Of course, this risk must be balanced against the goal of presenting participants’ statements accurately and respectfully through direct quotes. In addition, some participants may view their posted messages as published works subject to copyright protection, which might limit the researchers’ ability to alter or redistribute such original communications in scholarly publications unless they obtain the explicit permission of those authors.
Finally, negotiating consent at the group level to conduct research in the NFF online community may raise the issue of whether basic concerns for individual respect, beneficence and justice have been fully addressed. A simple majority vote limited to current members might not represent the interests of all participants in an inclusive manner. For example, some participants may not fully understand the risk of public exposure of sensitive online discussions, particularly since there could be no opportunity for face-to-face conversations to resolve potential ambiguities in the informed consent process. Moreover, Dr. McIntosh and Roger must decide how best to treat the posted messages of NFF participants who choose not to join the research project or do not complete an informed consent form. Consulting IRB administrators could produce a better strategy for developing a shared dialogue regarding informed consent that is sufficiently efficient yet protects individual rights. Prior IRB experience with documenting or waiving informed consent in online environments also may influence whether the board will accept digital signatures in lieu of handwritten versions.
Internet research challenges principal investigators and IRB members to apply current ethical rules within an online environment that continues to be transformed by socio-technical developments. Dr. McIntosh and Roger may decide to review the AOIR recommendations for guidance in conducting ethical research in virtual communities, and to consult the professional norms established by sociologists within their community of practice as well. Since no guidelines can keep pace with emerging technologies, however, Dr. McIntosh and Roger should interpret 45 C.F.R. § 46 and the Belmont Report in an adaptive manner that upholds the essential principles of both documents. In addition, they should leverage the expertise of IRB administrators to translate federal regulatory requirements in a meaningful way to reflect the ethical realities of the contemporary networked world.