Anonymous

Social science researchers have an obligation to protect research participants. While most researchers hold this as a central tenet of their research, it is by no means a straightforward process. This case study highlights two aspects of conducting ethical research — obtaining informed voluntary consent and evaluating the costs and benefits of research. Both are challenging endeavors considering how social science research navigates a sea of multiple interests and meanings relating to both informed consent and cost/benefit analyses.

Dr. Clark, like many researchers, is affiliated with multiple institutions (e.g. IFSN, the university) and conducts research within many different cultural contexts. While her university’s review board (IRB) may grant alternate informed consent considering her concerns, IFSN’s consent process may have little to do with ethics. Indeed, IFSN’s primary concern may involve issues of litigation rather than ethical considerations.

What if IFSN agrees to follow the decision of Dr. Clark’s university IRB to grant an alternate form of consent (e.g. verbal)? How should Dr. Clark go about drafting this considering appropriate forms vary depending on different contexts? For example, it may be more appropriate to use verbal consent when literacy rates among participants are very low.

It also is important to evaluate the positionality (i.e. cultural viewpoint) of all people involved with the study.  For example, how does Dr. Clark’s positionality (e.g. status as a Ph.D. researcher, woman, etc.) affect how she evaluates and interprets what constitutes informed consent? How might this be different from how Zigiwaians conceptualize informed consent? How might positionality (e.g. social class, race, etc.) among Zigiwaians affect interpretations of informed consent?  For example, does an “educated” city dweller conceptualize consent different from a “non-educated” rural dweller? How should Dr. Clark approach informed consent considering these differences?

Whether or not Dr. Clark proceeds with signed consent or some other form of consent, she also will need to conduct a cost/benefit analysis. This includes evaluating the potential costs and benefits of her research on individual community members as well as the community as a whole. Unfortunately, this is not a clear-cut process. For example, how should Dr. Clark weigh costs and benefits between individuals and the community as a whole? Is it ethical potentially to compromise the safety of a few community members (e.g. by having signed consent forms and asking about illicit timber harvesting activities) for the potential benefit of the community as a whole? 

Complicating the cost/benefit analysis further, there are many variables that cannot be clearly determined. For example, after conducting a cost/benefit analysis Dr. Clark may decide to move ahead with her research because she thinks its benefits outweigh the costs. In doing so, she is confident her research can strengthen IFSN's agro-forestry program. She cannot, however, guarantee that the results and recommendations derived from her research will be implemented or even considered. Should Dr. Clark take this into account when evaluating the costs and benefits of conducting the research considering these factors are out of her control?

While this case study highlights ethical considerations of informed consent in an international context, it illustrates ethical concerns that affect all social science research. Informed consent and cost/benefit analyses are central tenets of the research process, and we need to take them seriously. While there is no straightforward process of determining the best course of action, we can remain committed to protecting the rights of research participants by anticipating and evaluating as many factors as our faculties allow. Only then can we be assured that we are doing everything in our power to meet the needs of the very people social scientists are committed to helping.

References

• Cooper, David E. 2004. Ethics for Professionals in a Multicultural World. New Jersey: Pearson–Prentice Hall.
• Fluehr-Lobban, Carolyn. 2003. Ethics and the Profession of Anthropology. New York: Altamira Press.
• Sieber, Joan E. 1992. Planning Ethically Responsible Research: A Guide for Students and Internal Review Boards. Applied Social Research Methods Series 31: 1-161.
• Schiltz, Michael E. 1992. “Ethics and Standards in Institutional Research,” Journal of New Directions for Institutional Research 73: 1-85.  

Archaeology differs from most social and behavioral sciences in that living peoples are often not the direct subjects of archaeological research, particularly when dealing with the past in North America before European contact.  However, as recent research in the field and this case both demonstrate, archaeologists often must negotiate between several groups of living peoples in order to complete their research in what is becoming an increasingly complex political landscape. Substantial research has gone into exploring the relationship between archaeologists and Native Americans who are the living descendants of the people archaeologists study (Dongoske et al., eds. 2000; Swidler et al., eds. 1997).  While this relationship plays a role in this case study, the main focus is the broader relationship between archaeologists and other groups that have an interest in the past, also called stakeholders in archaeological research.

Every archaeological project has to deal with multiple stakeholders who have varying levels of power and authority over the research itself.  A typical project run by a professor at an American university may have several stakeholders, including the granting agency that provided the funding for the project, the land managing agency or landowner who owns the land upon which the research will be conducted, the university the professor works for, the facility in which the artifacts, notes, and reports from the project will be curated, the Native American groups who claim cultural affiliation with the area of study, the communities local to the area of study, and the archaeologist who is conducting the research.  Some of the relationships between these stakeholders and the archaeological research are codified in law; for example, land managing agencies will only allow research after legally required permits are obtained.  Other relationships are not quite as formalized, such as the relationship between archaeologists and the archaeological record.  While archaeologists do have some legal responsibilities to the archaeological record under state and federal permitting requirements, archaeologists are mostly guided by several codes of ethics developed by professional societies in the discipline (American Anthropological Association 2005; Register of Professional Archaeologists 2005; Society for American Archaeology 2005; World Archaeological Congress 2005).  For the most part, these codes of ethics do not explicitly prohibit specific actions, but instead attempt to encourage archaeologists to think and act responsibly towards the archaeological record.

The Society for American Archaeology’s Principles of Archaeological Ethics is probably referred to the most often when dealing with ethical dilemmas in archaeological research.  However, one of the main pitfalls of the Principles of Archaeological Ethics is the assumption that the scientific value of archaeological research takes precedence over all other ways in which the archaeological record can be valued.  In the case presented here, this system that values archaeological research for its scientific value, under which the protagonist, Millie, operates is pitted directly against other value systems that emphasize the commercial value of artifacts and the less tangible connections that landowners and communities feel to the past through the archaeological record.  Most if not all archaeologists would argue that the scientific value of the archaeological record far outweighs the commercial value, but archaeologists often falter when trying to explain why this is the case to other stakeholders, especially in a way that resonates with the general public.

The situation presented in this case is challenging, as all potential courses of action have negative consequences.  Clearly, Millie initiated her research alongside an effort to educate the local community and the owners of archaeological sites about why archaeologists value the scientific research potential of the archaeological record in order to prevent pothunting from occurring on the archaeological sites in her study area.  However, it is less clear whether Millie adequately took into account other ways that people, specifically landowners, value archaeology.  The landowner in this case had an obvious interest in learning more about the archaeological record, but may have felt that the best way for him to learn was to have a tangible link to the past through artifacts from a site.  Situations like this one are not uncommon in archaeological research, and archaeologists should carefully consider their actions and try to effectively take preventative measures to avoid such value conflicts in their own research.

References

• American Anthropological Association 2005 Code of Ethics of the American Anthropological Association. American Anthropological Association. http://www.aaanet.org/committees/ethics/ethcode.htm (accessed July 27, 2005).
• Dongoske, Kurt E., Mark Aldenderfer, and Karen Doehner, eds. 2000. Working Together: Native Americans and Archaeologists.  The Society for American Archaeology, Washington, D.C.
• Register of Professional Archaeologists 2005 Code of Conduct and Standards of Research Performance. Register of Professional Archaeologists, http://http://www.rpanet.org/ (accessed July 27, 2005).
• Society for American Archaeology 2005 Principle of Archaeological Ethics. Society for American Archaeology, http://www.saa.org/aboutSAA/ethics.html (accessed July 27, 2005).
• Swidler, Nina, Kurt E. Dongoske, Roger Anyon, and Alan S. Downer, eds. 1997. Native Americans and Archaeologists: Stepping Stones to Common Ground.  AltaMira Press, Walnut Creek.
• World Archaeological Congress 2005 World Archaeological Congress First Code of Ethics, World Archaeological Congress, http://ehlt.flinders.edu.au/wac/site/about_ethi.php (accessed July 27, 2005).

In this case study, the central issue revolves around Kenneth’s role as a researcher.  First, how does this role affect what people at the site can expect from him in terms of confidentiality?  Second, how does this role affect how he responds to overhearing information that may change the course of the impeding union vote?  And how will it affect his research goals?

In terms of Kenneth’s role in his research site, does he have an obligation to act on behalf of the workers whose union votes may be tampered with?  Or does he have an even stronger obligation to avoid disrupting or changing the situation at his research site?  Should Kenneth act as an “objective” researcher, avoiding involvement in the situation, or should he be an advocate for his participants?  This is an age-old question in the social sciences and one without a completely satisfactory answer.

Proponents of traditionalist, positivist social science would probably argue that intervening in this developing situation would somehow contaminate Kenneth’s data, or keep the researcher from accessing the “Truth” — the one and only “objective” reality of the research site, which should unfold without his interference.  This may be true in the sense that getting involved may block Kenneth’s ability to conduct further observations at this company.  But growing numbers of social scientists realize that not only does the researcher’s very presence at the site affect his or her data, but that there are many “truths”, and not one objective reality.  Feminist researchers in particular have argued that the position of the researcher (his or her gender, race, social class, and other characteristics) as well as that of the participants, will influence the questions the researcher asks as well as the answers he or she finds (Deutsch 2004).  So there are many truths in each research site.  Since all researchers carry their own backgrounds and biases, truly “objective” social science is not a realistic goal and never has been.  Researchers need only to be honest with their audience about their own positionality, and, in some circumstances, should become involved in their research sites, especially when they have knowledge that may help their participants.  The goal is to retain validity while being honest in a way that traditional positivist research has often not been.  Although this latter perspective has gained much legitimacy within sociology, there is still some disagreement within the discipline along the fault lines between qualitative and quantitative researchers, and even among qualitative researchers (Taylor 1999).

At the same time, in this situation, there are other circumstances to consider. Will going public with the information he has overheard compromise the physical safety of the researcher?  Will it involve him in a legal battle if plans to tamper with the union vote are uncovered?  Not only does the researcher face the epistemological questions of his discipline, but the additional issues faced by whistleblowers everywhere.  Further complicating matters is the fact that he did not hear specifically what was being planned, only that one or more drivers, aided by management, are planning to do something to challenge the rightful outcome of the vote.

In this case, it seems that his responsibilities are conflicting.  The terms of confidentiality he offered to workers at the site would seem to cover the information that he overheard.  On the other hand, he seems to have an ethical responsibility to the other workers at the site that may be harmed by those who would tamper with the vote.  Perhaps he could mediate this conflict by reporting the information he overheard, but not providing names.  This would protect confidentiality while keeping union officials on heightened alert for vote fraud.

References

• Deutsch, Nancy L. 2004. “Positionality and the Pen: Reflections on the Process of Becoming a Feminist Researcher and Writer.”  Qualitative Inquiry 10(6): 885-902.
• Taylor, Peter Leigh. 1999. “Qualitative Cowboy or Qualitative Dude: An Impasse of Validity, Politics and Ethics?”  Sociological Inquiry 69(1): 1-32.

The key questions in this case lie in the tensions between maintaining a research participant’s confidentiality and a researcher’s ethical obligations to the public weal.  While Barnes is at one level ethically obliged to maintain the confidentiality of his participant, tension emerges from his awareness of these weapons and the harmful use to which they could be employed, as well as from the possibility that he could be held accountable for not revealing their existence.   Barnes’s decision is further complicated by the certainty that reporting this individual to the authorities will ruin his research prospects, and by the not-insignificant possibility that to do so will also place him at risk of retaliation by the participant or his comrades.  In discussing this case, one might look to other examples of research involving criminality — studies of illicit sexual activity (Humphries, 1970) or of drug sales and trafficking (Adler and Adler, 1983), for example—in which researchers have maintained the confidentiality of their participants and have not reported illegal behaviors.  In these cases, however, the crimes are widely considered “victimless.”

The possibility, however remote, that these weapons could be used for violent criminal activity or in a revolt against government authority — and thus the possibility that the consequences would be much more severe and widespread — problematizes a comparison with victimless crimes.  On the other hand, one might argue that the types of weapons involved in this case are commonly owned, and thus represent a level of threat to which law enforcement agents are accustomed, and for which they are prepared to encounter.  Ironically, it is perhaps the rather prosaic nature of the weapons that complicates the issue: if Barnes’s participant had revealed that he’d constructed a truck bomb, Barnes’s obligation to the public weal would be unquestionable.  In this sense, Barnes’s decision may be guided by considering the threat posed to the public by various weapons along a continuum of lethal force.  By this utilitarian logic, Barnes might dismiss the need to report illegal personal weapons such as rifles.  What complicates this scheme, however, is the difficulty that would arise in intermediate cases — discovering an illegal pistol at one end of the continuum or a massive truck bomb at the other makes for an easy decision, while a machine gun might not.

In such cases, it might be useful for researchers to rely on cues of an individual or group’s intent, or on the group’s narratives vis-à-vis their weaponry.  In this case, Barnes might note that American militias generally consider their personal weapons (rifles, pistols, etc.) as defensive in nature — necessary tools to protect themselves from potential governmental coercion or tyranny.  A large bomb, by this standard, would be an offensive weapon, and is thus not consistent with the group’s narrative of action.  Possession alone of such a device could then be reasonably assumed to reflect imminent criminal intent, and would thus warrant action on the part of the researcher.  The converse is not true, however — it does not necessarily follow that possession of weapons considered by their owners to be defensive in nature can be seen as an absence of violent intent.  Ultimately, a researcher in such a case cannot definitively gauge his respondent’s intent.

Nancy Scheper-Hughes (2004) provides an illustration of one alternative to non-reporting of observed criminal behavior.  After studying illicit human organ trafficking networks, she offered general testimony to various legislative bodies and health agencies about the nature of the networks and their operation.  Following this example, Barnes might offer a description of militia activities to the appropriate authorities without naming specific members of the groups he’s studied. Upon finding evidence of coerced organ donation, however, Scheper-Hughes actively cooperated with international law enforcement agencies to target traffickers and surgeons.  Her decision to do so was clearly reached as the result of reaching an ethical tipping point — and how to identify that boundary is precisely the dilemma Barnes faces. Unfortunately, though, this example offers little guidance, for coercive organ harvesting provides such an egregious violation of all humane ethical standards that it cannot be seen as comparable to the crime of violation of gun possession laws.

In considering his design of the study and his discussion of informed consent with his participants, one might ask whether Barnes’s knowledge that many of his research participants maintain a defiant attitude towards many forms of Federal regulation—particularly in matters of gun control—should have led him to a more explicit or specific formulation of his informed consent materials.  Looking forward, this could be instructive to his future research and that of others. Offering warnings against discussing specific illegal acts—ranging from the common (illegal firearms possession) to the most extreme (bomb plots or other conspiracies)—rather than a blanket proscription against discussing “illegal activity,” might have prevented this situation in the first place, and could prevent a reoccurrence of such a case.  One must ask, however, whether we can reasonably expect a researcher to anticipate each and every possibility.

Similarly, by obtaining a Certificate of Confidentiality from NIH or other Federal agencies, Barnes can protect his participants’ recorded interviews from subpoena, thus further minimizing the risks they face by participating.  These documents, however, do not prohibit researchers from voluntarily disclosing information about research participants in cases in which the researcher believes them to be at risk or a danger to others.  Regulations governing these cases, however, explicitly state that if a researcher intends to make such voluntary disclosures, he should clearly indicate this on the consent form provided to potential participants.  This suggests that Barnes, ideally, should have more thoroughly considered the possible criminality he would encounter and set the standard for disclosure beforehand.  It is, however, difficult to predict how an interviewee would react to such a practice.  On the one hand, this might produce a more guarded interview.  On the other, such forthrightness and honesty in the early stages of the consent process might be seen as an indicator of the trustworthiness of the researcher.  Unfortunately, for any benefit this practice might provide, it could actually increase the risks faced by the researcher: what might happen when a research participant, in the middle of a taped interview, catches himself revealing behavior the researcher has indicated he will report to the police?  This represents an illustration of the unpredictability that characterizes the core of this case.  The uncertainty to what purpose the weapons will be put, the unpredictability of the reaction from participants, and the uncertain risks to both the public and the researcher himself creates the dilemma.

References

• Adler, Patricia and Pete Adler. 1983. “Shifts and Oscillations in Deviant Careers: The Case of Upper-Level Drug Dealers and Smugglers.” Social Problems 31(2): 195-207.
• Humphries, Laud. 1970. The Tearoom Trade: Impersonal Sex in Public Places.  Aldine Publishing Company: Chicago.
• Scheper-Hughes, Nancy. 2004. “Parts Unknown: Undercover Ethnography of the Organs Trafficking Underworld.”  Ethnography 5(1): 29-73.

This case study brings to light some of the potential problems that can arise when people with very different belief systems interact.  It also highlights some of the issues inherent to the extreme power differentials created by colonialism.  American anthropology was born out of a colonialist ideology, and this legacy continues to complicate relationships between anthropologists and indigenous groups today.

The colonization of North America has been devastating to the continent’s indigenous populations. The westward expansion of Euro-Americans acting on the ideological assertions of manifest destiny caused the wholesale slaughter and eventual extinction of some American Indian cultural groups, and displaced many of those who survived the assaults.  The driving of the final golden railroad stake joining the Union and Pacific railroads in 1869 symbolized the opening of the west for Euro-American settlement, while the 1904 San Francisco World’s fair display “End of the Trail” emblemized prevalent Euro-American assertions that the “Indian Race” was doomed to extinction.

During and since the era of initial colonization in North America, tens of thousands of sets of historic and pre-contact indigenous human remains have been exhumed and placed in repositories around the country.  The continued possession of these human remains by federal and state agencies is viewed by some as a continuation of colonialism; first control of the living and now control of the dead.

Since passage of The Native American Graves Protection and Repatriation Act (NAGPRA) of 1990, public attention has increasingly focused on the Indigenous dead of North America. The NAGPRA requires all federally funded repositories of Native American (as defined by the law) human remains to evaluate whether any living lineal descendents of particular sets of human remains exist, and/or whether “cultural affiliation” (as defined by the law) between a set of human remains and any “contemporarily federally recognized Native American group(s) can be reasonably identified.”  The NAGPRA provides a process for repatriation of the remains should recognized lineal descendents and/or culturally affiliated groups choose to employ it. But the NAGPRA only gives authority to federally recognized Native American groups and questions have arisen as to whether “cultural affiliation” can be identified through scientific analysis as some have assumed the NAGPRA requires.  Although the law was initially thought to support human rights, its numerous weaknesses for this purpose are becoming apparent.  Although many anthropologists support the repatriation of human remains to tribal groups, others have voiced opposition to the NAGPRA repatriation process.  The NAGPRA has sparked a renewed interest among some to conduct additional studies on these sets of human remains.

At primary issue in many contemporary conflicts between Native Americans and Western scientists is control of indigenous North American human remains.  Some indigenous North Americans have asserted their legal right and moral obligation to protect their ancestor’s remains.  These cultural groups assert that Native American dead should be given the same respect given any human.  Federal agencies assert their claim that human remains recovered from federal lands are federal property.  Some scientists argue they have a right to scientific freedom which includes performing studies on indigenous human remains.

Recent controversies regarding ancient North American human remains have often focused on questions of race.  These disputes have been further aggravated by hyperbole in the media.  Although the majority of anthropologists assert that race is a cultural construct, the “First Americans” debate has reinvigorated racism against Indigenous peoples in some communities.

A question remains as to how much can be learned from the study of pre-contact North American human remains and what importance should be placed on the potential knowledge recovered from such studies.  One should ask if Western scientists should prevail when their work has the potential to cause more harm then good.

Western belief systems dominate others due to colonialism, but is might always right?  Or, do we owe it to ourselves to question the foundations of all belief systems, including our own, before we force our ways of finding truth on others?

This case raises a number of issues concerning the challenges of conducting research in an international setting where cultural factors have the potential to interfere with the requirements of ethical research as desired and required from the home country. I will comment on the issues of informed voluntary consent and respect for persons.

Informed voluntary consent is critical to conducting ethical research, and this case compromised informed voluntary consent due to inequality of power. The head teacher exercises considerable power over the teachers, and his insistence that the teachers participate interferes with their right to volunteer for the study or not.  While there are three elements of consent, information, comprehension, and voluntary, the head teacher would like to bypass all three of these elements.  When Dr. Sheridan attempts to share information that would provide teachers with information about the study, the head teacher lets her know this is not necessary at all since the all the teachers will be participating.  The head teacher interferes with the teachers’ rights to volunteer and also interferes with their right to comprehension. By not allowing a discussion of participation and just stating that they will all participate, Mr. Konadu hinders their ability to ask questions about the study so that they would be able to offer informed consent for participation. Mr. Konadu’s actions also violate the element of voluntary participation, which means free of coercion and undue influence, by insisting they all participate.

In examining respect for persons, it is important to examine the nature of relationships in the research process.  Due to the power and authority in the relationships in this case, respect for persons is challenged on multiple levels. While it is important to avoid coercion, the researcher is in an ethical quandary. The support offered by both the district director of education and the head teacher is essential to the study, but this support stands to coerce participation in the study and compromise the study.  Participants have the right to agree to participate or not agree to participate, and the strong armed support by administrators seeks to take this right to choose away from the participants.  The power dynamic at work is a boss-employee relationship for the head teacher and the district director of education as well as for Mr. Konadu and the teachers.  This not so subtle pressure from the district director of education has led to outright pressure by the head teacher to force the teachers to participate in the project.

Respect for persons clearly means that you cannot coerce participation.  It also means that participants should not be unduly influenced by other people. This is the difficult part of this case. Although Dr. Sheridan is not coercing the participants, they have indeed been coerced into participating in the study.  This is a challenge for Dr. Sheridan.  Should she proceed with the study knowing that the participants were coerced into participating? What if the participants would have participated anyway?

Since the coercion seems to come from two levels, Dr. Sheridan may have to address these issues at the school level and at the district level. Due to cultural norms, it would not be appropriate for Dr. Sheridan to disagree with Mr. Konadu in front of the teachers. Since she is female, and he is male, she is expected to defer to him.  It is at this point that she must excuse herself and have this conversation with Mr. Konadu in a delicate manner so that he can save face, and she can let him know of her institutional and ethical responsibilities.  Perhaps in this smaller setting, she can assure him of her appreciation and willingness to have all of his teachers participate, but she can share the institutional paperwork which requires voluntary participation.

If Dr. Sheridan is unable to convince Mr. Konadu to allow the teachers to choose to participate, what should she do? She could leave the site and go to a different district where she also has permission to complete the study. What if she had no other areas to conduct the study? If she went ahead and completed the study at this site, she could speak with the teachers individually to gain consent, but it would be possible that some of the teachers would still be influenced by Mr. Konadu’s insistence that they participate. Perhaps, she could continue the study, but she would need to document this coercion.

Dr. Sheridan would also need to meet with the district director of education to discuss his role in coercion of teachers to participate. She will need to meet with the district director of education and convey her appreciation for his support of her work in the district while also describing the requirements for her study as outlined by her institution. During this discussion, Dr. Sheridan must explain the concepts of informed consent and voluntary participation as well as her ethical responsibility to these principles in her study.  If the district director of education does not agree to inform the head teachers that the teachers do have a right to participate or not to participate, Dr. Sheridan’s entire study will be compromised, and she will have to decide whether or not she should proceed with the study in this district.

Although Julie had the best intentions, she made a mistake common in many research situations. She should have taken more time to discuss her research with participant communities and individuals. The easiest way to do this is to design research to be collaborative. With this approach community members are also immersed in the research. It also opens opportunities to increase public outreach in the regions where Julie works, rather than limiting outreach to North American institutions and communities. Unfortunately, collaboration, immersion, and public outreach are difficult concepts to define and even harder to actualize.

Why didn’t Julie know to do these things? Often students are not adequately prepared for including collaboration and public outreach as parts of fieldwork. Fieldwork is unpredictable, unfamiliar, and often uncomfortable. Taking the time to interact with people in a foreign community is extremely time consuming, often taking more time than the research itself.

Compensation is a difficult notion to reconcile, especially when one considers that Julie’s career and reputation are strongly rooted in the information she collected during her PhD research in these communities. Adequate compensation is certainly important to consider in light of this. Although her fieldwork was short-term, she is gaining long-term benefits. Compensation should probably benefit the community for the long-term as well. There were probably things Julie could have done to meet long-term community needs.  For example, as an anthropologist, she may have been able to offer her experience and training to meet local community goals of cultural preservation.

If Julie had discussed her project with the community more, she would know if a return visit was necessary. Although the resolution of problems, such as Julie’s, are project specific, it is important to realize that cross-cultural research is undoubtedly going to involve unfamiliarity and naiveté on the part of the researcher. This is especially true when individuals approach communities with personal goals in mind.

Julie should have at least translated her journal articles into Spanish for the community. A rough translation would be better than nothing at all. Even if she did not do that, she should have brought English copies of her publications. The act of sharing her work is just as important as the information itself.

Hopefully this case study invites discussion of these issues and some sharing of experience that may highlight the unfamiliar and unexpected considerations of fieldwork.

Although this case involves a specific experiment in psycholinguistic research, several general ethical questions are addressed that can be applied to work outside of the area, including risk assessment, formation of the informed consent, subject selection, credit/participation, and reporting to the Institutional Review Board (IRB).  To aid in this treatment, the American Psychological Association (APA)’s Ethical Principles of Psychologists and Code of Conduct will be consulted as the ethical standard of this field. APA guidelines consist of five overarching principles that are meant to be general and aspirational coupled with ethical standards that are meant to address specific incidences that may arise in the course of psychological research.  This commentary will address Part 1 and Part 2 of the case study in turn.

Part 1

Part 1 introduces the experimental situation and raises background issues that may arise with research of this sort. The following are several themes that can be elaborated upon in discussion. Underlying these themes is a more general moral tension that runs throughout this case concerning the obligations of a researcher to science and their obvious need to protect the rights of their subjects. 

Risk assessment

The APA’s ethical standard 3.04 (Avoiding Harm) states that researchers must “take reasonable steps to avoid harming their clients/patients, students, supervisees, research participants, organizational clients, and others with whom they work, and to minimize harm where it is foreseeable and unavoidable.”  This scenario, however, is meant to provoke thought on this standard when the appropriate level of safeguarding in an experimental situation is less than obvious.  In Sophia’s case, the literature provides no guidelines for use of a negative role-playing task.  Research suggests that writing about negative events may be harmful, but it is not clear that that is what subjects are doing.  How should researchers assess such situations?  What are the “reasonable steps” that could be taken to minimize harm if the experiment should be allowed to proceed?  

Also underlying this dilemma is the role of the experimenter in making these judgment calls and in deciding whether the benefit of the research outweighs its potential risk. Question 1 challenges this role.  Further discussion can center on the position of the IRB versus the professional responsibilities that are placed upon members of academia. For example, APA explains that their guidelines were purposely written in such a way as to allow professional judgment on the part of psychologists (stated in introduction). How does this judgment come into play when ethical dilemmas arise? When should potential biases be protected against? In other words, how much responsibility should be given solely to the investigator rather than to a governing board such as the IRB?

Informed consent

An important concern in this study lies in the formation of the informed consent. This is raised early on in the fact that the data are intended for development of government technology.  It is plausible that some subjects would not want to participate in such an endeavor.  An obvious course of action would be to include this information in the informed consent. However, this may change the results substantially and affect the benefit such research has on homeland security.  Other issues may be brought up in discussion that stem from this problem.  For example, what if the scenario is slightly changed such that the experiment is being funded by these agencies and they put this information under security clearance? Does this change the moral obligations of the researcher from that of subject to country?  Should the experiment not be run if subjects cannot know the use of their data?  Would it be enough to let subjects know of this restriction? 

An additional issue concerning informed consent formation raised in this case lies again in the potential risks students face from participation in this task and how much information concerning this should be divulged. This is a classic ethical dilemma when conducting research (applicable also to the previous issue).  On one hand subjects have the right to know what they are agreeing to do. APA ethical standards dictate that researchers must inform participants of any “reasonably foreseeable factors that may be expected to influence their willingness to participate such as potential risks, discomfort, or adverse effects” (ethical standard 8.02a).  However, if the task is divulged the experiment may be jeopardized.  The argument from the literature for a potential risk is not very strong, but does this matter? Where is the line and who decides this?  When does it become necessary to include hypothetical problems in an informed consent?

Subject selection

A third general issue addressed in this case deals with subject selection and recruitment.  Question 3 raises issues concerning screening and use of students as subjects.  Use of language groups, though seemingly innocent, sometimes involves separation of ethnic groups (in this case: Hispanic, Asian, and Caucasian).  Combined with the essay topics (terrorism and crime), this may cause discomfort in participants just by its implications.  What are the ethical responsibilities of a researcher in this situation?  Additionally, the vulnerability of students as subjects can also be addressed in discussion at this point.  Should they be treated with more care than other sampling populations?

This scenario also touches on the use of incentives.  Having the experiment fulfill all of the student’s course requirements induces students to want to participate (leading to problems like those seen in Part 2).  APA’s recommendation for use of inducements seems inappropriate for this situation in stating that psychologists must “make reasonable efforts to avoid offering excessive or inappropriate financial or other inducements for research participation when such inducements are likely to coerce participation”  (ethical standard 8.06a). The current incentive is not excessive.   But, is it coercive?  An interesting point for discussion centers around the potential distinction between personal ethical choices and principles laid out by an institution.  Is simply following standard guidelines enough? What if these guidelines do not specifically address the moral issue in question?

Part 2

Part 2 is concerned not so much with experiment preparation as in Part 1, but with issues that may arise during the experimental situation.  More specifically, the problems Sophia faces concern subject credit/participation and reporting to the IRB.

Credit and participation

Sophia, in managing the concerns and behavior of the participant, chooses to refuse him full credit and participation in her study. Was this the correct solution?  APA guidelines state that when the concerns of the researcher are in conflict, they must “attempt to resolve these conflicts in a responsible fashion that avoids or minimizes harm” (Principle A).  Is this what occurred?  Did Sophia let her personal annoyance get in the way of resolving the situation peacefully?  Challenge students in discussion to come up with alternative courses of action along with the pros and cons of each.

Reporting to the IRB

Several concerns arise when considering the role of the IRB in this case study. The crux of the dilemma lies in whether or not Sophia should report the incident with the offending participant.  Doing so would jeopardize her research and its use, yet provide a safeguard against potential future harm of participants as well as provide a second opinion on a judgment that is potentially biased.  This raises two topics for discussion. First, how much information needs to be given to the IRB?  What qualifies as a harmful situation?  Second, should researchers rely on their own subjective judgment?  What about experimenter bias?  Are there ever situations where experimenters can rely on their own judgment calls?  In the discussion, it might be interesting to highlight the conflict between thorough reporting and wasting the IRB’s (usually taxed) resources.

The IRB is not only in place to protect the participants, but the experimenters as well.  A second thread of discussion—not often addressed—concerns the potential harm that researchers face in some experimental situations.  Sophia was bullied by the male participant and sexually harassed.  Is this something she should report to the IRB as well?  Is the task designed in such a way that these situations may reasonably arise in the future?  Should the experiment be re-evaluated for her safety as well?  Should she make this decision or allow the IRB to decide?

References

• American Psychological Association. 2002. Ethical Principles of Psychologists and Code of Conduct. http://www.apa.org/ethics/code2002.html.

This case examines ethical issues involved in conducting student research, a practice common in undergraduate experimental psychology classes. Specifically, it considers the circumstances under which student research is exempt from review by an institutional review board (IRB) and suggests the importance of incorporating research ethics training into experimental psychology class curricula. This case also examines broader issues in conducting research, and is an example of how poor planning at early stages of research development can lead to complex and potentially risky circumstances. James, the main character in this case, faces increasingly difficult ethical choices that might have been avoided if he had taken greater care in assessing the risks of his students’ research project and submitted their proposal to the IRB for review.

The case begins with James deciding whether he must submit his students’ research proposals for review by his university’s IRB. James considers whether his students’ research, which will be conducted for in-class, an educational purpose only, is exempt from review. Although the National Research Act, Public Law 93-348, states that the generalizability of the knowledge gained from a research study should be considered when making decisions regarding exemption from review, it also states that the potential for harm must be considered. Studies that do not contribute to generalizable knowledge are only exempt from review if they pose no harm to their participants. James is making his decision about whether his students’ projects will require review before he knows enough about them to make such a decision. James must know the nature of the studies before he can make an informed decision whether or not they should be submitted for review.

James consults with more experienced graduate students when deciding whether or not to submit his students’ research projects. Although the input of one’s peers can be invaluable in making ethical decisions, they can also be a source of bias since one’s peers share a common perspective. James and his fellow graduate students may share the perspective that submitting in-class projects for review is far too time consuming to be practical. Including other perspectives into the discussion, including those of potential participants, would assist in predicting risks to participants that may otherwise be difficult to imagine. Submitting research proposals to an IRB is an efficient and effective way to gain diverse perspectives, because the typical IRB includes representatives from outside the scientific community as well as research scientists from a variety of disciplines.

James’ students generate a variety of research project ideas, and most pose no harm to research participants. However, one project involves the assessment of depressive symptoms, and it is less clear what risks may be involved. It is at this point, when James knows the exact nature of the proposed research studies, that he is able to consider whether or not he should submit the proposals for review by his university’s IRB. The studies that clearly pose no harm to research participants would be exempt from review, according to the regulations of his IRB. However, the project involving the assessment of depressive symptoms should be submitted because James is probably unprepared to assess the potential harm of the study. The IRB would most likely be better prepared to assess accurately the risk involved. It is possible that having participants reflect on their depressive symptoms could increase their severity, and because the research is being conducted by students and on students from the same class, the possibility arises that students could learn about each other’s depressive symptoms. Thus, potential risks include the negative effects of asking about psychopathology and the loss of privacy and subsequent damage to the depressed students’ reputations.

Even if asking about depressive symptoms does not harm research participants directly, having this information could increase James’ degree of responsibility for the well-being of his participants and students. James never considers what his responsibility toward his students would be if he learned that several of them were depressed. His role as teacher requires him to consider the well-being of each individual student, and although his role as researcher requires him to consider the safety of his research participants, it also requires him to maintain confidentiality. James faces this ethical dilemma when he learns that several of his students are endorsing symptoms of hopelessness, thoughts of suicide, sleeplessness, problems concentrating, and irritability. Because James failed to prepare for this situation, he is left with imperfect response options. He is unable to identify the depressed students directly, and he feels that saying nothing to the students would be irresponsible. James decides that his best option is to announce to the class that several students may have depression, and he recommends that these students visit the student counseling center.

Because James did not consider the ethical implications of his students’ research projects, and because he did not submit the depression study for review, he faces a series of increasingly difficult ethical dilemmas. James should have submitted the one questionable study for review because he was incapable of assessing the risks and responsibilities involved. In addition, James should have involved his students in discussions about research ethics and the IRB since these are central aspects of conducting research in psychology. This may have helped James to avoid the ethical dilemmas that were to come. However, once he knew about his students depressive symptoms, he was compelled both as a teacher and researcher to take action. Furthermore, once James knew about his students’ depressive symptoms, the harm involved in potentially breaking confidentially was probably less than the harm involved in allowing potentially-depressed students to go without help. Although many research studies assess psychopathology without including treatment, they are typically designed in such a way that research participants are informed of their diagnoses and provided with treatment referrals. James should never have allowed the study to have been conducted as it was, and submitting the study in question to his IRB probably would have prevented him from doing so.

References

National Research Act, Pub. L. No. 93-348. (1974).

This case raises issues of the role of the IRB and the relationship between this ethical governance board and the individual researcher. Initially some issues raised by the case may seem ethically blurred. However, this is a case in which the researcher has a clear and well- established responsibility to submit a human subject’s research proposal to formalized, peer oversight.

The National Research Act, Public Law 93-348, requires that any institution conducting research that involves human participants establish an Institutional Review Board. All proposals for research involving human participants must be submitted to this board, which is charged with determining the legality of the research, and more importantly, compliance with higher ethical standards. The jurisdiction of the board extends to all research conducted to add to “generalizable knowledge.” These boards have ultimate authority over what research can and cannot be conducted at an institution. Research that has not yet been approved (or more obviously, been rejected by the board) cannot be pursued.  The question of what constitutes “research conducted to add to generalizable knowledge” and hence, what forms of research obligate a researcher to submit to board oversight is perhaps best answered in the negative. That is, what kind of “research” falls outside the jurisdiction of the Institutional Review Board? (See Title 45 CFR Part 46.101 for complete exemptions)  Pilot testing is one form that may not require formal oversight. In many cases, pilot testing of a new method or measure is first conducted with a small number of people. Often these pilot participants are members of the laboratory, graduate students, or a few of the researchers close friends. These pilot tests, of extremely limited scope, with little risk, and participants who are often also formally involved in the research, are typically exempt from IRB oversight. Note that this exemption is quite narrow. It does not include research with any possibility of risk or “pilot” research that includes participants with little connection to the laboratory. Given the limited nature of the exemption, it may be prudent for researchers to check informally with their IRB before deciding to proceed without board oversight.

Second, data collected solely for administrative purposes are not subject to IRB oversight. For example, university Registrar offices maintain large databases of student academic records. These data are employed to track student and university progress, but are not systematically collected to answer scientific research questions. For this reason, university administrators are not required to submit their tracking system (or similar databases) to the IRB for approval.

Finally, research that is conducted in the classroom for didactic purposes is also considered exempt. For example, a professor teaching a statistics course might collect a small data set from his students in order to illustrate a statistical technique (for example, the physical height of men and women in the class). The data are clearly not collected to add to scientific knowledge and carry no potential for harm. As such, it would be unwieldy and excessive to ask this professor to submit a proposal and wait for formal approval (not to mention, a waste of time for the reviewers).  This exemption is slightly less clear in the case of student led research. For example, research methods courses in psychology and sociology often involve a component in which each student (or groups of students) conducts a small study in order to provide hands-on experience with research design, data collection and statistical analysis. Typically, the student’s classmates serve as the research participants. This student research is technically exempt. However, the instructor should be sensitive to ethical considerations and ensure that student research meets the same standards required of research intended to add to scientific knowledge.

It is a common misconception that research not intended to be published is also an exempt category. It is sometimes mistakenly believed that the “generalizable knowledge” clause refers only to research that is published in scientific journals. In fact, the clause should be interpreted more broadly.  For example, a graduate student who conducts a small study and who plans to present this data at a departmental colloquium, but not to publish, is indeed adding to generalizable knowledge. The study was conducted to answer a research question and the obtained answer was shared with a small group of the research community. Extensive pilot testing, whether or not it is published, is also not exempt. Data obtained from these pilots contributes to the researchers understanding of the research question and even if not directly published, informs the direction of future published research. Lack of intent to publish is not considered a legitimate reason to bypass the oversight of an ethics board. Human participants have the right to be protected by independent ethical oversight whether or not the data they contribute is ultimately printed on the published page.

The study that Joshua plans to conduct does not meet requirements for exempt research. Although the study is a “pilot” study, the use of community participants moves this proposal outside the confines of typical pilot work and must be considered by an IRB like all other research. There may be a temptation for researchers to do the work of the IRB themselves. This is illustrated by Joshua’s argument about the non-coercive nature of the gift and the limited risk of the project. However, researchers have a vested interest in the process and may not be capable of making an unbiased decision about the risks involved in their research. For example, Joshua does not seem to consider the risk the experiment may pose to individuals with gambling problems. IRB members may have noticed this risk and been able to work with Joshua to mitigate it. By pursuing his research without the input of the IRB, he lost this valuable insight.  Joshua’s committee member, Dr. Johanson, also demonstrates the temptation of researchers to predict the ruling of the IRB.  In addition, he provides a poor example to a graduate student. His behavior indicates to Joshua that IRBs and ethics are not primary concerns in psychological research.

Finally, the graduate student who counsels Joshua that research conducted for didactic purposes is exempt from IRB approval is correct in this point. However she is incorrect to stretch the exclusion to cover Joshua’s research. While it is true that graduate training is a learning process, it also produces (and is intended to produce) empirical findings with implications outside of the classroom. As such, the fact that the research was conducted during graduate school does not constitute a broad exemption from ethical oversight. In fact, part of graduate training ought to be in research ethics and in the applied skills of communicating with an IRB.  

This case study includes many of the arguments hurried or frustrated researchers may use to justify bypassing the oversight of an ethics board. When deadlines approach it may be particularly tempting to find ways to avoid an extra step in the research process. However, all researchers who employ human subjects should be grateful for the donation that participants make to scientific knowledge and should repay this debt with a genuine consideration of their welfare. Submitting research proposals to the IRB is only one way, but an extremely important way, to ensure that subjects are protected.

Reference

Title 45 CFR Part 46.101.

Introduction

“Oral History Projects and Research Involving Human Subjects” focuses on a number of prominent issues in the ongoing debate about whether or not oral history is “research” defined by HHS and subject to HHS regulations, namely, IRB review.  Through this case, questions about the role of IRBs and professional organizations develop and illustrate the problems that emerge when IRB guidelines are applied to disciplines previously excluded from such review (e.g., oral history, anthropology, ethnography, and folklore).  While this case primarily focuses on whether or not oral history is subject to IRB review, other issues develop, such as the role of professional organizations in the research process and their relationship to IRB governance, how academic and professional goals inhibit ethical judgments, and how the role of a student’s advisor differs from his or her mentor.  In this commentary, I will focus on the debate on whether or not oral history interviewing should be subject to IRB review.

Background

On September 22, 2003, Michael A. Carome, Associate Director for Regulatory Affairs for the Office of Human Research Protections (OHRP), concurred with a policy statement drafted by the American Historical Association (AHA) and the Oral History Association (OHA) stating that most oral history interviews do not need Institutional Review Board approval.  After this concurrence, the position that the AHA and OHA strongly supported was oral history “does not meet the regulatory definition of ‘research’ and therefore is excluded entirely [emphasis mine] from IRB review, without seeking formal exemption.”¹ Since the OHRP never released its own policy on oral history interviewing, IRBs around the country did not adopt the AHA and OHA’s policy statement.  In October of 2003, at the request of the Office for Protection of Research Subjects at UCLA, Dr. Carome stated his position on the AHA and OHA’s policy statement:

In summary, the August 26, 2003 Policy Statement attached to OHRP’s September 22, 2003 letter was not drafted by OHRP, does not constitute OHRP guidance, and the characterizations of oral history activities in the third paragraph of the Policy Statement alone do not provide sufficient basis for OHRP’s determination that oral history activities in general do not involve research as defined by HHS regulations at 45 CFR part 46.²

This statement seemingly contradicted his prior concurrence; however, Carome’s statement did make it clear that the OHRP did not exclude oral history from IRB review.  But even after Carome’s statement to UCLA was widely distributed, the AHA issued a press release on June 8, 2004 that reaffirmed that most forms of oral history can be excluded from IRB oversight and ignored Carome’s communication entirely.

Ethical Issues and Analysis

The position of the AHA and OHA is based on the belief that IRBs have overstepped their purpose and jeopardized academic freedom by including oral history in the IRB review process. To them, the division between the scientific and nonscientific disciplines is vast and using the same federal guidelines to regulate all research is problematic.  Linda Shopes, a representative of the AHA, stated, “Applied to oral history interviews and other forms of nonscientific research, they [IRBs] present numerous, serious difficulties, especially because many IRBs are constituted of medical and behavioral scientists, who have little understanding of the principles and protocols of humanistic inquiry.”³  Furthermore, Linda Shopes stated, “Institutional Review Boards were established to prevent the very real physical and mental harm that some biomedical and behavioral research had inflicted on human subjects.”⁴ Instead of IRB review, the AHA and OHA defend the position that with firm ethical guidelines in place oral history can be effectively monitored through professional organizations and processes such as peer review.⁵

The essential questions presented by the AHA and OHA are what is research defined by HHS and what, if any, harm can come of oral history interviewing. The AHA and OHA do not believe that oral history interviewing leads to “generalizable knowledge” and, therefore, does not meet the definition of research as defined by HHS.  When Michael Carome clarified his position on oral history interviewing, he stated,

Oral history activities, such as open-ended interviews, that ONLY [emphasis in original] document a specific historical event or the experiences of individuals without an intent to draw conclusions or generalize findings would NOT [emphasis in original] constitute “research” as defined by HHS regulations.⁶

This position made it evidently clear that most oral history interviewing does require IRB review since oral history interviewing, especially by academics, leads to the formation of conclusions and general findings (i.e., generalizable knowledge).  In addition, oral history interviewing that is archived has the potential to be used by other researchers and become the source of generalizable knowledge as defined by the HHS.⁷

In addition, the potential for psychological harm for oral history subjects, while perhaps minimal in most cases, presents risks to human subjects.  The AHA and OHA have totally ignored these risks in their policy statement.  E. Taylor Atkins, associate professor at Northern Illinois University, expressed concern on the AHA and OHA’s policy statement and stated, “The principal concern of the AHA and OHA is the academic freedom of their members, but the recent decision [policy statement] does nothing to reduce the possible risks to interview subjects who participate in oral history projects.”⁸  Atkins also reminded researchers of Alistair Thomson’s Oral History Reader that warns of the risks associated with interviewing groups such as Holocaust survivors and veterans with post-traumatic stress disorder.⁹

Conclusion

This case sheds light on the ongoing debate between those who believe oral history interviewing should be excluded from IRB review and those who believe that IRB oversight is necessary.  The AHA and OHA’s policy statement advocating the exclusion of oral history interviews fails to show that oral history interviewing is not generalizable knowledge and ignores the inherent risks for oral history subjects. The AHA and OHA policy statement is, above all else, an attempt to avoid a perceived inconvenience, IRB review.  When what is ethically right is weighed against this, it is obvious that oral historians should value IRB oversight.  Other professional organizations such as the American Anthropological Association advocate that researchers involve the IRB and hold their research to the highest standards.  It is time that the AHA and OHA commit to a similar position.¹⁰

Notes

¹American Historical Association, “Questions Regarding the Policy Statement,” American Historical Association

²Office for Protection of Research Subjects UCLA, memorandum

³Linda Shopes, “Institutional Review Boards Have a Chilling Effect on Oral History,” Perspectives 38, no. 6 (September 2000)

⁴Linda Shopes and Donald A. Ritchie, letter to the editor, Perspectives 41, no. 9 (December 2003)

⁵Two examples include John N. Neuenschwander Oral History and the Law (Denton, Texas, Oral History Association, 1985) and Oral History Association, “Evaluation Guidelines,” Oral History Association

http:// omega.dickinson.edu/organizations/oha/pub_eg.html

⁶Office for Protection of Research Subjects UCLA, memorandum, http://www.oprs.ucla.edu/human/newsletters/Oral%20History%20031209.pdf

⁷Ibid.

⁸E. Taylor Atkins, letter to the editor, Perspectives 41, no. 9 (December 2003)

⁹Ibid.

¹⁰American Anthropological Association, “American Anthropological Association Statement on Ethnography and Institutional Review Boards,” American Anthropological Association

This case examines the ethical responsibilities of a researcher to protect the confidentiality of her research subjects.  According to Sieber (1992), confidentiality refers to the researcher’s “agreements with persons about what may be done with their data” (52).  Confidentiality differs from privacy, which refers to individuals’ control over access by others to them or to information about them, and anonymity, wherein individual identifiers such as names are not connected to the data or even known to the researcher (Sieber 1992).

In this case, the researcher is faced with questions about how to present her findings and with whom while still protecting her respondent’s confidentiality.  Sociologists and other social scientists who work with large data sets and present results as aggregate statistics often face little risk of their respondents being identified through research reports.  However, when samples are chosen for convenience or when purposeful sampling is used, identifying the research subjects becomes a real possibility.  For example, if a researcher studying teachers named the school district where the research occurred, someone with knowledge of the school district could likely identify individual teachers based on traits such as age, gender, and number of years with the school district (Sieber 1992).  Or, as is the case here, when a population contains only a small number of certain types of individuals, such as persons of a particular race, anyone with knowledge of the population used to draw the sample can likely identify these unique persons in the sample.

This “deductive disclosure,” as Sieber refers to it, is a particularly important ethical issue in qualitative research.  In much ethnographic or in- depth interview research researchers strive to understand a research question by using rich descriptions of individuals and particular social situations.  With in-depth interviewing, the words of respondents are critical pieces of data and are typically presented to support the conclusions the researcher has drawn after analyzing the data.  As such, the unique traits of individuals and groups are key components of the data and become essential to answering the research question.

A classic example of this dilemma is Carolyn Ellis’s ethnographic research which was the basis for her book Fisher Folk (1986).  Ellis’s data came from a single, remote and insular community.  When Ellis’s book was given to the research participants they were able to identify themselves and their neighbors in the book, even though their real names had not been used.  In this case, many of the study participants were angered by the perceived breach in confidentiality that occurred when Ellis published what they had told her.  Breaches in confidentiality such as those in the Fisher Folk example can shatter the researcher-subject relationship and can damage the public’s trust in researchers (Allen 1997).

In hindsight, Ellis (1995) contends that her problems could have perhaps been prevented by approaching the respondents with the data she planned to publish before she published it, thus allowing them to know what would become of their “data” and how they would be portrayed in the final research.  This undoubtedly means more work for the researcher, particularly when working with certain populations.  However, this approach could not only ensure ethically sound research, but may also lead to more theoretically sound research by allowing respondents to comment on the accuracy of the researcher’s data and interpretations.

Sieber takes the position that all issues of confidentiality should be considered beforehand and clearly stated in the consent form.  Thus, the researcher should carefully consider all potential uses of the data and clearly explain those uses in the consent form.  Following Sieber’s recommendation, in this case, Dr. Kline should have mentioned the presentation to the doctors in the consent form.  However, the extent to which one can foresee every possible threat to confidentiality is questionable.  Furthermore, researchers may not feel comfortable if bound to specifics laid out in the consent form.  For example, like Dr. Kline, a researcher may wonder if compromising respondent confidentiality is necessary in order to maximize the good that flows from sharing the study results.

Typically, consent forms ensure that identifying information will be removed from reports.  However, with qualitative research what constitutes identifying information can be very subtle and may depend on who the audience is that receives research reports.  Many qualitative researchers may then face the challenge of changing enough of the characteristics of the individual while still maintaining the essence of the data. 

References

Allen, Charlotte. 1997. “Spies Like Us: When Sociologists Deceive their Subjects.” Lingua Franca 7(9).

Ellis, Carolyn. 1995. “Emotional and Ethical Quagmires in Returning to the Field.”  Journal of Contemporary Ethnography 24: 68-98.

Ellis, Carolyn. 1986. Fisher Folk:  Two Communities on Chesapeake Bay.  Lexington: University of Kentucky Press. 

Sieber, Joan E. 1992. Planning Ethically Responsible Research: A Guide for Students and Internal Review Boards.  New York: Sage.

A critical ethical concern in this case is the issue of informed consent by students. From the time a student contacts a university or college to express interest in applying to the moment a student departs (either as a graduate, a transfer, or a drop out), a variety of data are collected about the student. These data, such as financial aid status, academic progress, and application material, are necessary for the business of the institution. They can be used by the institution for any operational purposes or internal program evaluation without student consent. However, the use of these operational data for secondary purposes (that is, purposes other than those originally intended during collection) raises many questions about how to treat informed consent on the part of students.

Obtaining informed consent from the hundreds of thousands of students whose information would be contained in databases similar to those proposed in this case presents considerable challenges. For example, the monetary costs associated with contacting each student and explaining the proposed research to be conducted would be prohibitive. In addition, because personal identifiers are often completely stripped from the databases, it may in fact be impossible to contact individual students for their consent. These obstacles make it even more incumbent upon researchers to consider the ethical issues raised in using these data.

The question of developing and maintaining comprehensive student unit records is complex. On the one hand, legislators, taxpayers, parents, and students increasingly demand accountability from institutions of higher education. For example, legislators want to know if taxpayer money is being spent effectively to educate citizens. Student unit records enable institutions to answer such questions more precisely as well as more broadly. The finer the level of detail stored in research databases, the more precisely questions about effective education can be answered.

On the other hand, student unit record databases are not a panacea. They cannot answer all questions raised by the constituents of higher education in a definitive manner. The nature of the educational enterprise is so complex (think about all the factors than can influence whether a student graduates and in what length of time) and so varied that it is almost certain that disagreement about what constitutes an effective education will be around as long as there are institutions of higher education. Given this reality, the potential costs and consequences of a student unit record database must be seriously considered. To illustrate ways in which SUR systems impact the lived experiences of students, it may be helpful to briefly consider a current and sometimes contentious debate within the higher education community.

Equal opportunity to pursue higher education — particularly for low-income and historically underrepresented groups — is a major concern for policy makers and researchers in education. A considerable body of literature exists exploring the pathways students take to college, the factors that influence opportunity to attend, and the variables that impact whether students are successful in their educational pursuits. Within this debate, the impact of financial aid and academic preparation are two key areas of exploration. Student unit record databases have enabled researchers to examine the effects of high school curriculum on college enrollment. Likewise, the effects of financial aid have been closely examined using SURs. One school of thought argues that academic preparation has the greatest influence on college enrollment. Another school of thought agrees that academic preparation is important, but alone is insufficient to ensure college qualified students enroll. Rather, meeting financial need — particularly for low-income students — is equally important. As policy makers have increasingly focused on academic preparation in high school as the key factor in college enrollment, low-income, college qualified students are losing the opportunity to attend college because of unmet financial need (St. John & Parsons, 2003).

Regardless of the school of thought with which one agrees, data collected for administrative purposes by institutions is used in the research both sides use to support their arguments—all without informed student consent. In addition, policy makers may leverage particular aspects of this research base to support ideological arguments that may or may not be in the best interests of particular students. For example, focusing on academic preparation to the exclusion of financial aid may disproportionately impact students of color. With decreasing public support of education and increasing demand, the equal education opportunity stakes are high. Research often plays a crucial role in shifting or buttressing terms of the debate.

In addition to potential policy effects of SUR based research, security comprises another area of ethical consideration. Although technological advances enable increasingly secure storage and transmission of private data, recent high visibility data theft at institutions of higher education (Northwestern University, California State University at Chico, Boston College, University of California at Berkeley, to name a few) illustrate the potential for abuse of large student unit record systems (Carnevale, 2005).

In conclusion, researchers, policy makers, and administrators who currently use or are part of the creation of student unit record systems must weigh the potential costs and benefits of such a system. If possible, students themselves should be involved at some level of the discussion. The ethical implications of creating a database should be considered before more technical discussions about security are had. In short, the “why” of student unit record systems should be addressed before the “how.” Central to the debate of SUR systems is the issue of informed consent. If informed consent cannot be obtained, researchers may want to consider other ways in which the autonomy of subjects can be respected. For example, researchers might make the effort to distribute research findings to constituent groups represented in the databases. Minimally, researchers should engage other researchers as well as policy makers in ongoing debate about how to be responsible stewards of data which was obtained without explicit consent.

References

St. John, E., & Parsons, M. D. 2004. Public Funding of Higher Education: Changing Contexts and Rationales. Baltimore, MD: Johns Hopkins University Press.

Carnevale, D. May 6, 2005. “Why Can’t Colleges Hold On to Their Data? A string of high-profile security breaches raises questions about the safety of personal information.” The Chronicle of Higher Education, Volume 51, Issue 35, Page A35.

This case highlights the role of ethics in incorporating online information with confidential data from personal interviews, using an emergent research design, and managing concerns over internal confidentiality. Some of the concerns raised in this case are issues that often arise in social science research, while others are fairly new issues that relate to technological changes. 

New websites pop up each day, but the ethical guidelines surrounding them often lag far behind. Professional codes of ethics in many disciplines do not have specific policies for research using online data. This case raises a number of issues concerning new technologies. It is important that researchers are aware of the ethical principles of respect for persons, beneficence, and justice that are discussed in the Belmont Report (1979) and work to incorporate these principles into any research that they conduct and/or write about, regardless of whether there are specific guidelines that relate to the research they are conducting.

Another set of issues that are raised in this case surround internal confidentiality. Internal confidentiality involves participants in research being able to figure out the identity of, or other details about, other research participants. The issue of internal confidentiality is a concern with or without the online information, although the inclusion of the online information raises the stakes and makes it more likely that respondents may figure out the identities of other respondents — most likely their friends — even with the use of pseudonyms. Very few researchers discuss issues of internal confidentiality; one notable exception is that by Tolich (2004). More often, the focus is on protection against identification by individuals who are not participants in the research, which is referred to as external confidentiality. Although it is rarely discussed, internal confidentiality is important in social science research. Two notable cases where internal confidentiality was breached include Carolyn Ellis’ (1986) study of Fisher Folk and William Whyte’s (1943) study of Street Corner Society. In both these cases, participants knew each other intimately and, therefore, could identify some of the other respondents in research publications, which, in turn, may have allowed them to find out confidential information about these people that they did not know before the study (Tolich 2004). This disrupts relationships among people, including respondents, the researcher, and other individuals who are part of the community. For example, when Carolyn Ellis returned to the field after publishing her results, she faced a cold reception from her respondents, who were previously very friendly and warm towards her, due to their concerns over internal confidentiality, and the interconnected issues surrounding their representation in research publications (Ellis 1995). As Marie’s research focuses on intimate relationships (i.e., friendships), sometimes between research participants, maintaining internal confidentiality will be one of the challenges of writing up the results of this research in an ethical manner.

In order to publish research that maintains the rigor demanded by her discipline while also adhering to ethical principles she believes in, including respect for persons, beneficence, and justice, Marie must do a careful cost-benefit analysis to decide how to proceed.  Should she privilege maintaining the accuracy of her data at the cost of respondents’ privacy or confidentiality?  Or should she privilege internal and external confidentiality over the accuracy of the data?  How much can she paraphrase — or change, if she deems it necessary — the details of people’s profiles on the Internet site without altering the results of her study and its validity?  She has given each person — both those she interviewed as well as their friends and other individuals they mention — a pseudonym to protect their confidentiality.  She also has changed other identifying information, such as names of clubs or organizations to which they belong as well as hometowns, to further protect her respondents’ privacy.  However, it is possible that Marie does not know exactly which details will identify her respondents to their friends.  A related set of issues revolve around whether or not to identify the website.  Should Marie identify the name and web address of the website where she got this Internet information so that other researchers can check the validity of her interpretations?  Or should she not reveal the identity of the website as a further precaution in terms of confidentiality (both internal and external confidentiality)?  Marie struggles with the cost-benefit analysis of preserving the accuracy of her data and her respondents’ confidentiality and privacy.  There is no easy solution.

As discussed in the case, these issues become even trickier because Marie is using an emergent research design.  Her research design was flexible to allow for shifts in data collection based on what she learned in the field.  Most important to this case, the inclusion of the Internet data was a decision that occurred after her research was underway.  In part 1 of the case, Marie wonders if she should view this online data and if there is an ethical difference in viewing Internet data for participants (such as Jane), for whom she has obtained informed consent, versus other students, for whom she does not have informed consent.  A question that arises from this is when it is appropriate to obtain permission for this aspect of her research from the university’s Institutional Review Board for the Protection of Human Subjects (IRB).  Marie could have filed an amendment to her IRB proposal as soon as she suspected that she might want to use data from this website in her dissertation.  Given that all of this was emerging as she was in the field and talking with students, she decided to wait until she had a better idea of what data she would like to incorporate into her research and a better idea of the ethical issues involved before filing the IRB amendment.  While this approach seemed preferable to Marie, it seems possible that others would argue the opposite:  that to protect the rights and confidentiality of her respondents, Marie had an obligation to seek IRB approval as soon as she thought she might want to use this data.  One important point is that Marie did not publish or present on aspects of the projects that incorporated the Internet data until she had IRB approval for these activities.  If she had, this would certainly be a breach of her obligations to her research participants and her university’s IRB.  Some ethical decisions are clearer cut than others.

The emergent research design allows Marie a good deal of flexibility in her methodological decisions, which opens up alternative solutions to these ethical dilemmas.  In addition to the options discussed in Part 2 of the case and the questions that follow, there are other options available to Marie.  She may incorporate the Internet data into her dissertation for methodological rather than substantive reasons.  Marie could use the information on the website as a validity check on the information that she gathered during the interviews.  To what extent do students’ website postings match what they told her during the interview?  If they do not match, what are some possible reasons and how should she deal with it?  This is one way to make use of the rich data gathered from the website and tie it to the interview data without putting interview respondents at further risk of being identified.

One final issue is that surrounding Marie’s desire to incorporate feminist methodology in her research.  Most germane to this case, feminist methodology seeks to reduce the distance between researcher and subject as well as to give back to research participants (Reinharz 1992).  As discussed in the case, Marie offered each participant a copy of her transcript and interview recording as well as a copy of a published paper that comes out of the research; nearly all participants requested a copy of a published paper.  In this case, Marie’s desire to use feminist methodology and give back to her research participants complicates her ability to maintain internal confidentiality.  It will require more time on her part if she decides to send different people different published papers.  However, she will know to consider these confidentiality issues surrounding interpersonal relations in future research projects.

References

• Ellis, Carolyn.  1995.  “Emotional and Ethical Quagmires in Returning to the Field.”  Journal of Contemporary Ethnography 24: 68-98.
• Ellis, Carolyn.  1986.  Fisher Folk:  Two Communities on Chesapeake Bay.  Lexington: University of Kentucky Press.
• The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.  1979.  The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects (Federal Register Document 79- 12065).  Washington, D.C.: Government Printing Office.
• Reinharz, Shulamit.  1992.  Feminist Methods in Social Research.  New York:  Oxford University Press.
• Tolich, Martin.  2004 “Internal Confidentiality:  When Confidentiality Assurances Fail Relational Informants.”  Qualitative Sociology 27 (1): 101-106.
• Whyte, William T. 1943. Street Corner Society: The Social Structure of an Italian Slum. Chicago: University of Chicago Press.

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:

• Blogs
• Chatrooms
• Computer-supported collaborative workspaces
• E-mail
• Instant messaging
• Listservs
• Massively multiplayer gaming environments
• Newsgroups
• Online communities
• Podcasts
• Webcams and video chat
• Web sites

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.

Selected Bibliography

• Allen, C. 1996. “What’s wrong with the ‘golden rule’? Conundrums of conducting ethical research in cyberspace,” The Information Society, 12(2), 175-187.
• Association of Internet Researchers Ethics Working Committee. 2002. Ethical decision-making and Internet research. Retrieved on October 14, 2005, from http://www.aoir.org/reports/ethics.pdf.
• Bakardjieva, M., & Feenberg. A. 2001. “Involving the virtual subject,” Ethics and Information Technology, 2(4), 233-240.
• Bassett, E. H., and O’Riordan, K. 2002. “Ethics of Internet research: Contesting the human subjects research model,” Ethics and Information Technology, 4(3), 233-247.
• Berry, D. M. 2004. “Internet research: privacy, ethics and alienation: An open source approach,” Internet Research, 14(4), 323-332.
• Binik, Y. M., Mah, K., & Kiesler, S. 1999. “Ethical issues in conducting sex research on the Internet,” Journal of Sex Research, 36(1), 82-90.
• Boehlefeld, S. P. 1996. “Doing the right thing: Ethical cyberspace research,” The Information Society, 12(2), 141-152.
• Bromseth, J. C. H. 2002. “Public places—public activities? Methodological approaches and ethical dilemmas in research on computer-mediated communication contexts,” in A. Morrison (Ed.), Researching ICTs in context. Inter/Media Report 3/2002. Oslo: University of Oslo. Retrieved on October 14, 2005 from http://www.intermedia.uio.no/konferanser/skikt-02/docs/Researching_ICTs_in_context-Ch3-Bromseth.pdf.
• Brownlow, C., & O’Dell, L. 2002. “Ethical issues for qualitative research in on-line communities,” Disability & Society, 17(6), 685-694.
• Buchanan, E. A. 2002. “Internet research ethics and institutional review boards: New challenges, new opportunities,” in E. D. Garten & D. Williams (Eds.), Advances in Library Administration and Organization, 19 (pp. 85-99). Greenwich, CT: JAI Press.
• Buchanan, E. A., Ed. 2003. Readings in virtual research ethics: Issues and controversies. Hershey, PA: Idea Group Publishing.
• Bruckman, A. 2002. “Studying the amateur artist: A perspective on disguising data collected in human subjects research on the Internet,” Ethics and Information Technology, 4(3), 217-231.
• Capurro, R., & Pingel, C. 2002. “Ethical issues of online communication research,” Ethics and Information Technology, 4(3), 189-194.
• Cavanaugh, A. 1999. “Behaviour in public? Ethics in online ethnography,” Cybersociology, 6. Retrieved on May 24, 2005, from http://www.socio.demon.co.uk/magazine/6/cavanaugh.html.
• Childress, C. A., & Asamen, J. K. 1998. “The emerging relationship of psychology and the Internet: Proposed guidelines for conducting research,” Ethics and Human Behavior, 8(1), 19-35.
• Elgesem, D. 2002. “What is special about the ethical issues in online research?” Ethics and Information Technology, 4(3), 195-203.
• Ess, C. 2002. “Introduction: Special issue on Internet research ethics,” Ethics and Information Technology, 4(3), 177-188.
• Ess, C. 2003. “The cathedral or the bazaar? The AOIR document on Internet research ethics as an exercise in open source ethics,” in M. Consalvo et al. (Eds.), Internet research annual vol. 1: Selected papers from the Association of Internet Researchers conferences 2000-02 (pp. 95-103). New York: Peter Lang Publishing.
• Eysenbach, G., & Till, J. E. 2001. “Ethical issues in qualitative research on Internet communities,” British Medical Journal, 323(10), 1103-1105.
• Flicker, S., Haans, D., & Skinner, H. 2004. “Ethical dilemmas in research in Internet communities,” Qualitative Health Research, 14(1), 124-134.
• Frankel, M. S., & Siang, S. 1999. Ethical and legal aspects of human subjects research on the Internet: A report of a workshop. Washington, DC: American Association for the Advancement of Science.
• Hakken, D. 2003. “An ethics for an anthropology in and of cyberspace,” in C. Fluehr-Lobban (Ed.), Ethics and the profession of anthropology: Dialogue for ethically conscious practice (2nd ed., pp. 179-95). Walnut Creek, CA: AltaMira Press.
• Herring, S. 1996. “Linguistic and critical analysis of computer-mediated communication: Some ethical and scholarly considerations,” The Information Society, 12(2), 153-168.
• Hudson, J. M., & Bruckman, A. 2004. “‘Go away’: Participant objections to being studied and the ethics of chatroom research,” The Information Society, 20(2), 127-139.
• Jacobson, D. 1999. “Doing research in cyberspace,” Field Methods, 11(2), 127-145.
• Johns, M. D. 2005. “Unique and ordinary problems in Internet research: Research ethics, the law, and power politics in institutional review,” Iowa Journal of Communication, 37(1), 87-101.
• Johns, M. D., Chen, S. S., & Hall, J. G., Eds. 2004. Online social research: Methods, issues, and ethics. New York: Peter Lang.
• Jones, R. A. 1994. “The ethics of research in cyberspace,” Internet research: Electronic networking applications and policy, 4(3), 30-35.
• Keller, H. E., & Lee, S. 2003. “Ethical issues surrounding human participants research using the Internet,” Ethics & Behavior, 13(3), 211-219.
• King, S. A. 1996a. “Researching Internet communities: Proposed ethical guidelines for the reporting of results,” The Information Society, 12(2), 119-127.
• King, S. A. 1996b. “Commentary on responses to the proposed guidelines,” The Internet Society, 12(2), 199-201.
• Kleinman, S. S. 2002. “Methodological and ethical challenges of researching a computer-mediated group,” Journal of Technology in Human Services, 19(2/3), 49-63.
• Kraut, R., Olson, J., Banaji, M., Bruckman, A., Cohen, J., & Couper, M. 2004. “Psychological research online: Report of the scientific affairs advisory group on the conduct of research on the Internet,” American Psychologist, 59(2), 105-117.
• Mann, C., & Stewart, F. 2000. Internet communication and qualitative research: A handbook for researching online. Thousand Oaks, CA: Sage Publications.
• Mathy, R. M., Kerr, D. L., & Haydn, B. M. 2003. “Methodological rigor and ethical considerations in Internet-mediated research,” Psychotherapy: Theory, Research, Practice, Training, 40(1-2), 77-85.
• Nosek, B. A., & Banaji, M. R. 2002. “E-research: Ethics, security, design, and control in psychological research on the Internet,” Journal of Social Issues, 58(1), 161-176.
• Office for Human Research Protections, U.S. Department of Health and Human Services. 2004. Human subject regulations decision charts. Retrieved on October 14, 2005, from http://www.hhs.gov/ohrp/humansubjects/guidance/decisioncharts.htm
• Pittenger, D. J. 2003. “Internet research: An opportunity to revisit classic ethical problems in behavioral research,” Ethics & Behavior, 13(1), 45-60.
• Reid, E. 1996. “Informed consent in the study of on-line communities: A reflection on the effects of computer-mediated social research,” The Information Society, 12(2), 169-174.
• Schrum, L. 1995. “Framing the debate: Ethical research in the information age,” Qualitative Inquiry, 1(3), 311-326.
• Schrum, L. 1997. “Ethical research in the information age: Beginning the dialog,” Computers in Human Behavior, 13(2), 117-125.
• Sharf, B. F.  1999. “Beyond netiquette: The ethics of doing naturalistic discourse research on the internet,” in S. Jones (Ed.), Doing Internet research: Critical issues and methods for examining the Net (pp. 243-256). Thousand Oaks, CA: Sage Publications.
• Sixsmith, J., & Murray, C. D. 2001. “Ethical issues in the documentary data analysis of Internet posts and archives,” Qualitative Health Research, 11(3), 423-432.
• Stern, S. R. 2003. “Encountering distressing information in online research: A consideration of legal and ethical responsibilities,” New Media & Society, 5(2), 249-266.
• Thomas, J. 1996. “Introduction: A debate about the ethics of fair practices for collecting social science data in cyberspace,” The Information Society, 12(2), 107-117.
• Thomas, J. 1996. “When cyberresearch goes awry: The ethics of the Rimm ‘cyberporn’ study,” The Information Society, 12(2), 189-198.
• Walther, J. 2002. “Research ethics in Internet-enabled research: Human subjects issues and methodological myopia,” Ethics and Information Technology, 4(3), 205-216.
• Waskul, D., & Douglass, M. 1996. “Considering the electronic participant: Some polemical observations on the ethics of on-line research,” The Information Society, 12(2), 129-139.
• White, M. 2002. “Representations or people?” Ethics and Information Technology, 4(3), 249-266.

This list includes the name, affiliation, website, and comments from each of the participants in the Synthetic Biology and Engineering Ethics Workshop conducted at the National Academy of Engineering 500 Fifth Street, NW, Washington DC, September 30, 2010.

SYNTHETIC BIOLOGY

Kristala Jones Prather, Assistant Professor of Chemical Engineering at MIT,
(Website)

Bruce Rittmann, Director of the Center for Environmental Biotechnology in the Biodesign Institute at Arizona State University,
(Website; Comments) 

Brian Pfleger, Assistant Professor of Chemical and Biological Engineering at the University of Wisconsin-Madison,
(Website; Comments)

James Kealey, Director of the Molecular Biology Department, Amyris Biotechnologies
(Website; Comments)

ENGINEERING ETHICS

Deborah Johnson, Anne Shirley Carter Olsson Professor of Applied Ethics in the Department of Science, Technology, and Society in the School of Engineering and Applied Science of the University of Virginia, 
(Website; Comments)

Carl Mitcham, Professor at the Center for Science and Technology Policy Research, Colorado School of Mines
(Website; Comments)
 

Michael Loui, Professor of Electrical and Computer Engineering at the University of Illinois – Urbana, 
(Website; Comments)

Mariachiara Tallacchini, Professor of Philosophy of Law at the Law Faculty of the Catholic University of Piacenza (Italy),
(Website; Comments)

Research Questions

Participants in the workshop were asked to consider the following questions.  The "Comments" listed below include each participant's pre-workshop responses to these questions.

• FOR EXPERTS IN ENGINEERING ETHICS
  • After reading the one-pager, can you come up with two questions focused on ethical issues that seem key to developing socially responsible synthetic biology?
  • Can you also formulate one personal reflection about the shape that collaborations between engineering ethics and an emerging technology like synthetic biology should take?
  • What activities and materials should have priority in ethics training in synthetic biology?
• FOR EXPERTS IN SYNTHETIC BIOLOGY
  • After reading the one-pager, can you come up with two ethics-related questions that seem key or unaddressed, or that you have encountered while practicing bio-engineering/synthetic biology?
  • Can you also formulate one personal reflection about the shape that collaborations between experts in synthetic biology and experts in engineering ethics should take?
  • What activities and materials should have priority in ethics training in synthetic biology?

Collection of human samples in epidemiological studies has increased over the years, especially with the emergence of biomarkers as clinical indicators of outcomes (in this case pregnancy). This case is a good one for new students who may not know whether researchers should inform research participants of their test results. The case is designed to provoke discussion regarding the release of test results to participants, the use of consent forms, and the problem of conflict among committee members.

The case begins by introducing the basics of the study, but only for the female participants. Deliberately, the first paragraph mentions the female role in the study, but subsequent paragraphs gravitate back to the couple. Even the first two questions use the word "couples" instead of female participant. Keep this distinction in mind when discussing the case.

Question 1. Should Wilma notify the couples about their pregnancy test values? Does Wilma have an obligation to inform all participants of their results, as Ready suggests?

Immediately, most new students will say that this is an easy question. Of course the couples should be notified about their test results. Re-emphasize that these test results will be coming to the participants at least a year after the fact. Ask how the results should be reported to the participants: as quantitative values? as qualitative values? What kind of explanation should accompany the results? Then start to play on emotions here. What about couples that had pregnancy losses? How will you inform them and explain their results? Should discussions with these couples differ from discussions with couples who had successful pregnancies?

Next, direct discussion away from the couple to the female participant. "What if the female participant does not want to know her results? Do we send them to her anyway?" At this point, the role of the consent form should be considered. Help the students come to an understanding that on the consent form, a box can be checked off specifying whether the participant wishes to receive test results. This box should be preceded by a paragraph describing the testing procedures that clearly informs that participants what kind of results will be available.

Another discussion can arise from this question: "What if the female participant does not want to know her test results, but her husband or partner does? Does he have a right to the test results?" Again, this question points out the ambiguity of a study based on couples in which individuals provide data.

Question 2. Is there any medical benefit in informing couples of their pregnancy results?

Most couples experiencing infertility receive a recommendation to see a specialist after 12 months of unsuccessful attempts at conception. The research results would be beneficial for the doctor, especially if an early spontaneous loss occurred. This result would indicate to the doctor that the couple is able to conceive, but is having problems maintaining the pregnancy.

Question 3. How should Wilma handle the conflicting opinions of her committee members?

When researchers work together, conflicting opinions may appear. However, conflicting opinions among committee members can cause panic for students. The following are some suggestions based on one institutional perspective. Adapt the discussion to your own institutional practices.

Deliberately, the case does not indicate that Knowledge offered an opinion. He is Wilma's adviser, and Wilma should utilize him when conflicts of this nature occur. Wilma and her adviser should discuss the opinions of her committee members and make a decision together. Ultimately, establishing a compromise, as suggested with the check-off box on the consent form, will help in Wilma's situation. What if Ready is not willing to reach a middle road, but still believes that all participants should get a copy of their test results no matter what? Again, the student should ask the advice of her adviser. Knowledge needs to back his student.

Ultimately, the committee is composed of individuals chosen by the student. The student has a right to dismiss anyone from his or her committee. This step is recommended only as a last resort.

This case is intended to have a two-fold utility. First, it provides a framework for discussion of ethical decision making between science faculty members and prospective graduate students. Second, it places the glut of graduate students in science, a topic that might otherwise be taboo, in a forum where both faculty and students can address concerns. The topic has been gaining in importance as more graduate students seem to be entering various fields, even as job opportunities seem to be scarce. The problem seems clear, yet the responsible parties are not as evident. The topic raises a variety of issues that may be difficult to discuss in an open exchange involving both students and their faculty advisers. Focusing on the case may allow them to address their concerns more comfortably and openly in an nonthreatening setting.

Because the case involves a variety of parties who have very different rights and responsibilities, it might be enlightening to discuss the case within the framework of relational ethics. Within this framework, each character (or group, institution, etc.) should be addressed in terms of the rights that they have (or should have) and their responsibilities to the groups with which they have a relationship. Ethical decision making by the various participants involves the balancing of all characters' rights, while honoring their responsibilities. In many cases analyzed in this way, a solution may be reached that maximizes the likelihood that responsibilities will be met. What may be most frustrating (and therefore interesting) about this case is that it may become evident that it is impossible for some of the characters to honor all of their responsibilities, and therefore a quick fix may not be apparent.

In this case, the main players are Steve Hill, Mike Bowman, Alice Devorak and Butz. The other, less obvious players might include the department faculty, the university, the scientific community, granting agencies and professional societies.

To highlight the importance of examining ethical decision making in terms of rights and responsibilities associated with an individual's relationships, I will briefly discuss some of Hill's decisions.

At a simplistic level of analysis, Hill has the following relationships, which are accompanied by specific responsibilities:

Relationship with: Mike Bowman

Responsibilities: To make an honest assessment of his potential in graduate school and beyond. To treat him fairly, without bias based on race, religion, etc.

Comments: Although these responsibilities may seem clear, it is not difficult to think of situations where Hill's responsibilities may actually infringe on Mike's rights. For example, perhaps one would argue that it was wrong for Hill to deceive Mike with regard to the status of his proposal; the correct action would have been to be honest from the outset. Therefore the right action for Hill would be to explain his misgivings and turn Mike down.

Perhaps, however, Hill sees potential in Mike and does not want to dissuade him entirely from science and graduate school, but instead wants to discourage his entering Hill's research program. Hill would have the best perspective on whether his research program was fruitful in terms of his graduate students finding employment. Although Hill's actions are paternalistic, perhaps he is in an appropriate position to act in such a way.

Relationship with: The department and university

Responsibilities: To maintain an active research program that brings both prestige and a consistent source of income to the institution. To mentor graduate students.

Comments: Although Hill's responsibilities to the institution are far more complex, this may be an appropriate starting point. The case explains that Hill has enjoyed a successful career and therefore perhaps his mere presence at the university affords the institution a source of prestige. Contrast this situation with that of Devorak, a junior faculty member. If prestige is gained through productivity and publications, how would her status in the department affect her decisions about staffing her lab?

Hill has received a favorable review regarding a pre-proposal he submitted. This response is a strong indication that his project will be funded. Assume that the proposal has sufficient funding (and research needs) to support a new graduate student. Hill feels, however, that he has become disjointed from the science, and is not satisfied with simply writing proposals and manuscripts, while the graduate students and technicians carry out the research. (He shares Devorak's concerns.)

Although he knows that he could get the funding and add a graduate student, he does not feel comfortable with the situation, and therefore does not pursue the funding. Has he violated his responsibility to the university? Based on Butz's comments, he has clearly violated his responsibilities to his department. But what are Hill's rights? Is he in an autonomous position to decide whether he should take on the funding?

It is clear that when we fold in the university's relationship to its graduate students, the situation becomes exceedingly complex. If the university educates graduate students, is it appropriate to view them in the context of cheap labor? Does the university have responsibilities to the graduate students beyond that of education? Or do all of these questions lead back to the responsibility of the prospective graduate students to recognize the limitations in the job market and their role in the university system?

Of course, the case may be approached in many ways. In order to get a feel for the frustration of the participants, a relational framework seems to work well, however. The above analysis is merely a jumping off point. In order to fully explore the appropriate actions of Hill and Devorak, all of the relevant relationships need to be considered. It may be especially important to consider the role of the scientific community and the granting agencies. Remember that researchers' status in the community and with the various granting agencies relies heavily on their perceived productivity. Emphasis on quantity over quality may threaten the fabric of good science.

This case is not intended to focus on the policies and procedures of viewing student records. Different institutions undoubtedly have specific policies about obtaining this kind of information while maintaining student privacy. Faculty and students should be aware of those policies and follow them.

Rather, the case is intended to focus on professors' responsibilities for helping their students deal with deficiencies in understanding and knowledge. Each course has a specific body of information that is intended to be transmitted to the student. If a chemistry professor noticed that a student had a problem understanding physics, he would send that student to the physics department. If he discovered a deficiency in computer programming, no one would expect him to do anything more than send the student to the computer science department for further study.

Teaching responsibilities become less clear when a student in a chemistry course does not understand mathematical tools that are utilized in the course. It is easy to say that Dr. Franklin should teach Jim the necessary math to complete the course assignments, but that would be done at a cost to the other students in the class, the graduate students Franklin is advising, and the other departmental responsibilities he carries. The huge amounts of time he has already spent with Jim have prevented other students from having their questions answered. This type of situation also arises for graduate student instructors who have teaching responsibilities on top of their own course work and research responsibilities.

It is important for Jim to be made aware of his deficiencies. School is the time when Jim will have the most resources available to learn the material that he needs to master in order to earn a meaningful degree. Institutions have many sources of help in the form of resource centers, tutoring and help sessions, learning centers, etc. Professors and graduate students should be aware of these resources to enable students to receive the help they need. Rather than simply ignoring Jim's lack of understanding, Franklin identified a specific deficiency, helped generate reasonable solutions and ultimately left the student in a position to decide how to proceed to solve the problem.

It is also essential to help students who need special attention without compromising them within the department by gossiping about their problems and difficulties. Other faculty members in the department are likely to encounter students in other courses or asked to write recommendations for them. Discussions about students must be responsible and respectful.

This case is meant to bring to the forefront some issues related to the testing of pharmacologic agents in children. As is stated in the case, children physiologically are not always just smaller versions of adults. Disease states may present and progress differently in children than in adult counterparts. For these reasons, not all therapeutic drugs can be given to children in smaller dosage with the assumption that the pharmacological effects will be the same as in adults. A drug may be more or less efficacious in children than in adults, and the side effect profile may be different or less tolerable to a younger person. These issues can be resolved only by controlled clinical trials in the target population.

Part 1 of this case focuses on the problems associated with inadequate studies in children and concerns with designing trials involving the pediatric population. The first ethical concern is raised by pediatricians using Eradovir in children although the drug has Food and Drug Administration approval only for adult use. This kind of prescribing practice is known as "off-label usage." A pediatrician may be faced with this prescribing situation if the drug of choice has not been studied in children for a specific disease state. Prescribing drugs in children without adequate clinical studies could be detrimental to the patient; however, it also may be extremely beneficial, especially in life-threatening diseases such as AIDS. The agents used to treat AIDS can be very toxic but, given in proper dosages, they can prolong life. Without adequate study, pediatricians may not have information regarding appropriate dosages and therefore can over- or under-medicate the child, increasing risk. On the other hand, patients may be denied potentially life-saving drugs because rigorous tests have not been performed on their specific age group.

Part 1 also deals with protocol design. Cureall scientists are debating the justification of a placebo arm to the trial. For a clinical study to determine whether a therapeutic agent has activity against a specific disease, a control group is needed for comparison of the positive and negative effects of the drug. The control group subjects may be given an inert pill known as a placebo, or, if other drugs are available for use in that disease, the test drug may be compared against the currently used agent, called "standard of care." The problem in this case is that there have been no previous clinical trials with antivirals for AIDS in children, and thus no appropriate therapeutic standard of care has been established. Therefore, Eradovir will need to be tested against a placebo to determine whether it is efficacious. A placebo group in the clinical trial will require that some infected children be given an inactive pill. If Eradovir proves to be effective against AIDS, then the children who received placebo will lose essential treatment time; however, if Eradovir is shown to have untoward effects or to be of little benefit, children in the placebo group will have been spared the risk. American Academy of Pediatrics (AAP) guidelines state that a placebo is ethical to use "when there is no commonly accepted therapy for the condition and the agent under study is the first one that may modify the course of the disease process." (American Academy of Pediatrics, 1995a). In the situation described in this case, a placebo group may be ethically and scientifically justified.

The second question Cureall scientists are discussing is whether compensation of study subjects is appropriate. Subjects in many clinical studies receive a small amount of money or gift certificate as compensation for participating. Ethical issues can arise if the amount paid is so high that it may entice people to take risks they would not normally take for the sake of the financial reward. In the Eradovir study, $100 will be given for every month of study completed in addition to free medical checkups. Since the clinical centers that will be conducting the study are urban hospitals, there is a great chance of having a large percentage of subjects from low-income backgrounds. The study design must guard against parents deciding to enroll their child, regardless of the potential risks associated with Eradovir, for the $100 per month and free medical care. An extra $100 per month may not appear to be a large sum of money, but it may be significant for disadvantaged families. Compensation for any study must be carefully evaluated to minimize the risk of subjects enrolling for financial gain regardless of the risks associated with the study.

In addition to determining participants' compensation, the investigators must decide whether the money will go directly to the child or to the parent/guardian. Is it the child's money or the adult's? The parent or guardian is the one providing the overall care for the child and is responsible for getting the child to the physician's office for study participation. They are taking time out of their schedule and could be taking time from work. However, the child's body is the one being used to conduct the experiment. It seems more ethically appropriate for payment to go directly to the child than to the parent/guardian. Of course, writing a check in the child's name will not guarantee that the child will receive the money. Also, to most children mature enough to understand the value of money, $100 is not a trivial amount. Such issues need to be carefully evaluated while developing the protocol.

The case continues with Part 2, describing a scene in a physician's office with a foster mother (Mary), the foster child who has AIDS (Liz) and the physician (Dr. Kid). Dr. Kid, an investigator involved with Cureall's Eradovir protocol, is trying to recruit Liz as a study subject. The first ethical issue is addressed by Question 1: Dr. Kid reassures Mary about Eradovir's potentially serious, even fatal, side effects. Could Dr. Kid's comments be considered coercion? Dr. Kid's responsibilities are to answer accurately all of Mary's questions and concerns regarding the protocol. Although Dr. Kid is correct in telling Mary that the fatal side effects are rare and that none of his patients has ever suffered from them, it is inappropriate to tell her that he is unlikely ever to witness such adverse events in his patients. Dr. Kid has no way to determine if one of his patients will suffer such problems from Eradovir therapy in the future. After downplaying the negative effects, Dr. Kid highlights all the potential benefits of therapy. His behavior would be considered coercive. Dr. Kid should be honest in telling Mary that Liz could develop a serious and potentially fatal complication, no matter how rare. Further, quickly refocusing Mary on the potential benefits of being a patient in the study is a way of enticing her.

This case is made more complex by Mary being Liz's foster mother rather than her biological parent. Whether or not a foster parent can enroll a foster child in a trial depends on the laws of that particular state (Levine, 1991). Unfortunately, children may be orphaned by AIDS. We will assume that this case is taking place in a state that allows foster children to be enrolled in clinical studies.

Question 2 focuses on Mary's decision to allow Liz's participation and whether the decision is easier to make since she is not a biological parent. That is a very difficult issue to address. Mary, like most foster parents, may be as loving to Liz as she is or would be with her biological children. Just because a child is not a biological offspring does not mean that a foster parent cannot provide as good or possibly better care than the biological parent. Both biological and foster parents are capable of providing loving and nurturing environments; however, both groups can provide unhealthy environments as well. It is unfair to assume that Mary is not giving Liz a wonderful home.

Dr. Kid's role here is to evaluate the relationship between Liz and Mary and to try and determine if it is adequate. He definitely needs to take the foster relationship into consideration. How long has Mary been Liz's foster mother? Does Liz appear happy with Mary? Does Mary have a history of providing foster care and, if so, is it a good record? Does Mary have biological children, and, if so, were/are they well cared for? As with all families he encounters, Dr. Kid needs to evaluate how the parent views the child. The child needs to be protected against enrollment in the study for inappropriate reasons (i.e., financial/medical incentives).

Question 3 raises the issue of assent. In the case, Liz is a 3-year-old child and thus too young to intellectually assess the situation and the associated risks and benefits. Typically, assent is sought from children who have an intellectual age of at least 7 years, in addition to parental permission (American Academy of Pediatrics, 1995b). If Liz were a 10-year-old of normal mental capacity, assent should be required for her participation in the study. If she were to decline enrollment it would be unethical to use coercive measures, financial or otherwise, to induce her to participate.

In Question 4, readers are asked to reflect on whether they would allow their own children to enroll in the Eradovir study. Most people would probably agree that there is good medical and scientific reason to study pharmacologic agents in children. However, whose children should be study subjects? If Liz were your offspring, would you allow her to participate in this clinical study knowing she will exposed to the risk of developing severe and possibly fatal side effects? On the other hand, the therapy may extend her life and improve her quality of life. This question really is posed to get the reader to think more personally about research in children. It may seem necessary, as long as the studies do not involve their children.

This case touches on only a few of the ethical issues related to children's participation in research. As difficult as the concerns may be, the knowledge gained from such studies is worth the effort. Carefully devised research protocols aimed at answering questions regarding children's health will allow for better treatment of pediatric populations, but they must guard against unnecessary risk.

References

• American Academy of Pediatrics Committee on Drugs. "Guidelines for the Ethical Conduct of Studies to Evaluate Drugs in Pediatric Populations." Pediatrics 95 (1995a): 286-294.
• American Academy of Pediatrics Committee on Bioethics. "Informed Consent, Parental Permission, and Assent in Pediatric Practice." Pediatrics 95 (1995b): 314-317.
• Levine, C. "Children in HIV/AIDS Clinical Trials: Still Vulnerable after All These Years." Law, Medicine and Health Care. 19 (1991): 231-237.