Ethical Issues in Incorporating Online Information with Interview-Based Research
When performing research on friend networks on social media sites, what kinds of protections should researchers use to protect the privacy of their research subjects?
Marie Smith, a PhD student, is conducting dissertation research about women’s friendships in college and how friendships influence women’s academic and intellectual lives. As part of the project, she interviewed over 80 undergraduate women at a large, public university. The interviews include collecting data from the students about their friends (e.g., who their friends are, where they live, and what their majors are if they are in college) and the relationships among their friends. At the end of the interview, she asks each participant if they would like a copy of a published paper that comes from the research; most students request one and many seem excited that their stories will be read by others and used to help reach better understandings of friendships and college life. She has approval from her university’s IRB for these activities and to conduct follow-up interviews with students.
During the first months of interviewing, students frequently mention a website where they chat with friends, where they post information about themselves (such as their classes, where they live, their favorite books, movies & quotes, and a photo) and where “friends” can mutually select each other to add to their social network and talk to each other online. Several women suggest that Marie look at this website because it was a way they did some things discussed in the interview (e.g., keeping in touch with friends, making new connections with people, and finding students in their class to study with, ask questions to, or get notes from). One interview participant in particular, “Jane,” is surprised that Marie has not seen the website and is adamant that Marie pay attention to this website because she sees it as an important part of friendship at the university. Jane further encourages Marie to get on the website by telling her that she should look up Jane’s friends because they have lots of postings about school and friendships.
After the interview with Jane, Marie attempts to view this website and discovers that she must register for the site in order to be able to view people’s profiles on the site. She registers and sets up a profile for herself with very limited information (i.e., her name and status as a graduate student) and makes it viewable to the public. On the site, individuals can choose to allow anyone to view their profile or they can restrict who can see their name on searches, who can see their profile, and what aspects of the profile they can see (and they can also block individual people from viewing their profile). After Marie sets up her profile, she searches the site for Jane and finds her profile and those of her friends, and the information seems to confirm what Jane told her during the interview.
- Was it appropriate for Marie to register for the website so that she could view the site and better understand this aspect of students’ friendships for her dissertation research? Would it have been responsible for her to ignore this website given that students stressed its importance for their friendships and college experiences, topics which are central to her research?
- Was it appropriate for Marie to look up Jane’s profile on the website and to compare this Internet information to the data collected during the interview?
- Was it appropriate for Marie to view the profiles of Jane’s friends (most of whom Marie has not interviewed)?
Over the next few months as she is interviewing, Marie continues to browse this website, viewing profiles of women she interviews as well as others students from the college. During the interviews, she does not tell her participants that she has looked at the website unless they ask; when asked, she informs students that she has seen it. Marie gives a presentation on her dissertation data at a conference and decides not to use any of the information from this website in order to preserve participants’ confidentiality. Her dissertation committee members encourage her to include information available from the website in her dissertation. She is getting ready to write her dissertation chapters and is not sure how much of information from the Internet profiles to include, if any.
Using direct quotations and/or photographs students have posted could identify students and does not seem like the ethical thing to do. Marie feels that this issue takes on added importance because she has confidential data from her interviews that if presented alongside information from the same person’s Internet profile, would identify her participants to anyone who wanted to search the website for the information from students’ profiles. Marie wonders if the potential benefits to her participants and social science research are greater than the potential costs of identifying individual students. As she volunteered to give participants copies of a published paper from the research and some of her participants are friends with each other, Marie feels that her participants may be able to identify others in the findings and discover confidential information if interview data is linked to quotations (or other identifying information) from the website. She is considering paraphrasing the information from the website (including the students’ favorite movies, quotes, etc., and their number of friends) so that the main points from the profile will be conveyed without identifying individual students. Pseudonyms — for students, their friends, and other identifying information such as the names of organizations they belong to — are used throughout all written and oral reports about the project.
Marie decides to file an amendment to her original proposal to the IRB asking to include data from this website, excluding any identifying information, in her project. She also proposes to use only information from the website that students have chosen to make publicly available. The IRB approves her request.
- What precautions should Marie take in giving presentations on and writing about this data?
- Are Marie’s efforts to remove identifying information from the students’ profiles and paraphrase this information enough protection to ensure the privacy and confidentiality of her interview participants? If not, what else should she do?
- By removing and paraphrasing information from students’ profiles, is she fudging or misusing data? Is it more important to preserve the accuracy of the data or respondents’ privacy in this situation? What else could Marie do so that she does not misrepresent the information on her participants’ profiles?
- Should she identify the specific website from which she got this information (which she has IRB approval for) or should she describe the genre of the site from which it came without identifying the specific site (as was done in this case study)?
- Should Marie have asked her interview participants for their explicit permission for her to include paraphrased Internet data from their profiles in her research? Why or why not? If she would have asked participants for their permission for this at the outset of the research, would their consent be truly informed as much of what Marie was looking for regarding the profiles is unknown at this point of the research? In other words, how can Marie act most ethically in this situation given that the risks of the research were not fully known to her at the start of her research?
- If the potential costs of the research are greater than the benefits, one option would be to use information from students’ profiles on the website without linking any of this online information to specific participants in her research. Is this a better alternative? Why or why not? If so, is it more ethical to use direct quotations or paraphrased information from the website in this situation?
- Is it unethical of Marie to have filed an IRB amendment for approval for something she already had been doing (i.e., viewing information on the website about her interview participants) for months? If so, what should she have done differently?
Marie has sought to incorporate feminist methodology into her research design, methods, and dissemination plans. Feminist methodology seeks to reduce the distance between researcher and subject as well as to give back to research participants (Reinharz 1992). In line with these goals, Marie decided to offer 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. A few participants requested a copy of their transcripts and interview recordings; Marie gave these to the participants after the interviews were transcribed. Nearly all participants requested a copy of a published paper. Although Marie is glad to be able to give a little something back to her participants who have given her so much by sharing their experiences with her, this has added some additional ethical complications to the study. While it is always a good —and ethical — practice to assume that your participants will have access to any published results from the study, it seems to be unusual that most participants actually see the write-up. Marie’s fear is that participants, particularly those who are friends with each other, will be able to identify one another. If they can identify others in the research, they may also uncover information about individuals that they would not know if they had not read the research. If this were to happen, the confidentiality she promised her research participants would be breached.
She plans to publish several papers based on this research. Rather than give each participant the same paper, Marie is considering spending time selecting a paper for each individual that shows their contribution to the research while minimizing the contributions of their friends, if possible. The extra time spent seems worth the protection it will provide to respondents’ confidentiality.
On the other hand, Marie wonders if it would, perhaps, be easier and also an ethical position to not send papers to her participants at all unless they contact her about it.
- What are Marie’s obligations to her participants who requested a copy of a published paper of the research when Marie offered it to them?
- What are Marie’s obligations to protecting the confidentiality of the participants in her research? Should Marie’s desire to protect her participants’ confidentiality override her promise to her provide a copy of a published paper to those who requested one?
- Are Marie’s obligations to her participants different given that nearly all of them will be given a copy of published results from the study? In other words, should Marie do anything differently in this case than in a normal study, where participants are able to locate a copy of the published results themselves? If so, what should she do differently and why?
Reinharz, Shulamit. 1992. Feminist Methods in Social Research. New York: Oxford University Press.
The case of Marie’s friendship research is an interesting and delicate one and well-suited as a case for social scientists. As the other commentator points out, there are several ethical problems involved, not least the question of internal vs. external confidentiality. The issue of both external and internal confidentiality enriches the case considerably; at the same time it makes it more complicated. The problem with internal confidentiality is the difficulty for researchers to camouflage adequately the identity of respondents in regard to their fellow respondents in the interview sample. Using pseudonyms, changing the town, changing the major, etc. for each interviewee will certainly help, but a researcher won’t know about potential other identifying elements that can be picked up only by insiders (perhaps from excerpts of interviews used in publications).
At the same time, there is an important issue having to do with the way in which identities are being camouflaged. It would be good to know some more details about the nature of Marie’s research on friendship formation. What is the hypothesis being tested — at least what type of hypothesis is involved here? Depending on the type of study involved, certain camouflage attempts may be more or less adequate. When Marie substitutes, say, the subject of a class where two people met and became friends, or the names of the specific streets, buildings, or floors where they lived, is it OK to substitute a history class with a chemistry class? That depends on the type of study involved.
Here is an example. One would assume that a study of friendship formation in a university setting would take into account the classical findings of Leon Festinger and others when it comes to who makes friends with whom — the theory of “functional distance.” This theory emphasizes the role of proximity and frequency of contact for friendship formation. All other things being equal, people tend to like those they come in contact with on a regular basis. Take the hypothetical example of substituting a class in chemistry with a class in history. This type of substitution might lead to loss of important information. In theory at least a chemistry class with its laboratory work should naturally provide a better place for making friends than a more sedentary history class. Also, in this type of study the actual physical locations (campus addresses) of participants are important for their estimated chances of “bumping into” one another on a regular basis. The challenge is how to make adequate substitution without losing the spatial information.
In summary, then, a study involving spatial factors in friendship formation is an example of research that might require less of potentially identifiable personal detail. If spatial elements are of primary interest, spatial considerations might rather safely guide the substitution process without loss of scientific information. The problem will depend on the nature of the study, and before we know the nature of the study, it will be hard to give more specific advice as to the balance of ethical concerns vs. the needs of research. It seems to me, however, that leaving the matter in the hand of Marie and her own cost-benefit calculations leaves the problem far too open.
We also need more information about another matter. One concern was whether Marie did the right thing in looking up students on the website. It is unclear if Marie was a graduate student at the same university in which she was doing friendship research, or another university. If she was doing research at “her” university, that would explain how she so easily could just register on the website. If not, how could she register at all as an outsider? In both cases, however, the network doesn’t seem to be a place for people who want to protect confidential information. Marie could register without revealing much about herself while getting access to detailed information about potential friends. The network appears to be a quite open one, intended for people who “want” to be found by others. Probably one should not worry too much about Marie looking up people on the website.
In general, the numerous and diverse ethical problems involved in a case like this make me think that it is not enough to identify potential ethical issues in research. We need a set of additional guidelines as to how to organize and prioritize ethical concerns in situations with many ethical issues. Marie, just as any other researcher, may get unduly confused and nervous if she tries to find a solution that takes into account all the different and conflicting ethical issues on an equal basis.
Marie may be complicating issues for herself by offering her interviewees copies of a published paper. However, transcripts and interview recordings would seem to be something that interviewees should have access to in principle. But the scholarly conclusions drawn by a researcher in a publication (also relating to the existing discourse on the subject) are not necessarily going to coincide with interviewees’ own perceptions. This raises a larger issue about “truth” in research — should or should not the researcher’s truth coincide with her subjects’ truth? Can there be two or more different coexisting truths? Can the truths be contradictory? Berger and Kellner may be invoking a difficult standard when they, in a Weberian mode, say:
Personally, I believe that a successful study should have some kind of validation by the subjects whose world it purports to understand. This is the position I take in my own Defenders of the Truth (Segerstrale, 2000, chapter 18). But in some cases this may involve working with one’s subjects to make them understand one’s interpretation. And there may be cases where a convergence of researcher’s and subject’s truth is not possible or even desirable.
Berger, Peter and Hansfried Kellner. 1981. Sociology Reinterpreted. New York: Doubleday Anchor Books.
Segerstrale, Ullica. 2000. Defenders of the Truth. The Battle for Science in the Sociobiology Debate and Beyond. Oxford and New York: Oxford University Press.
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.