Ethics Case #1 ~ EPSE 595 October 10

Changing research plans and ethics

A doctoral student is preparing for her dissertation defense in a medical anthropology program. Her research on family relationships and child treatment discusses the borderlands of medical anthropology, child abuse and neglect. She has important theoretical contributions to make in the area of evolving cultural definitions of parent-child relationships among the subpopulation she studied. The student plans to publish her work, complete with many of the candid black-and-white photos she took of the children and families she studied. She is stunned by the evocative power of these photographs, but:

1. when she began her research, she did not include photographic methods as part of her application to the Research Ethics Board;
2. consequently, she has no signed permission from any of the individuals pictured in the photographs to use these identifying images in research or publication; and
3. some of the photographs portray evidence of physical violence with children that might be considered child abuse by professionals outside the study community.

DISCUSSION QUESTIONS
• What might the researcher have done differently so as not to be confronted with these dilemmas upon completion of the research?
• Did the researcher do anything wrong by using data collection methods not included in the original proposal? Why or why not?
• How can the dissemination of this student’s work be facilitated? How can the research participants be protected?
Does the researcher adopt a utilitarian, deontological or virtues approach to ethics? Explain why.

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34 thoughts on “Ethics Case #1 ~ EPSE 595 October 10

  1. One of the very common situations in interpretive, field based research is that there is an evolution of ideas about what the research questions are and what data might be most credible, useful, meaningful to answer those questions. So the situation of using methods not initially anticipated is not uncommon. One of the ongoing challenges to interpretive research is determining what it means to act ethically within the situation without necessarily being able to prespecify what exactly the research will look like–in terms of methods, but also in terms of number of participants, contexts and so on.

  2. To not be confronted with these dilemmas upon completion of the research, the researcher could have included the possibility of other data collection methods, with consent of the participants, in her research proposal. She could also have had all partipants sign a waiver before agreeing to become participants that informed them that she might take pictures for research purposes and that the pictures might be used in publication. For such a waiver, I imagine the researcher would have to assure participants that their faces or other identifying images (house numbers, etc) would be blurred or not included in pictures for publication if she wanted to increase chances that people would participate. I am guessing that at the time of taking the photographs, the researcher felt they were only to be used as data for her own interpretation. I do not think this is wrong if she gave the families the choice not to be photographed by at least orally seeking permission. However, I do not think she can use the photographs in publication with only an oral agreement. To facilitate publication of the photographs then, I think she would have to seek written permission from each of the subjects (and the children’s parents or guardians). The researcher appears to have adopted a utilitarian approach to ethics because she felt the benefit to medical anthroplogy by taking and publishing the photographs outweighed the participants’ right to privacy.

  3. Before starting my comment, I must first state that hindsight is 20/20…

    I think it is completely fair — if not expected — that research methods change throughout the life of any research project. If she had known that photographic methods would be used when she first was applying to the REB, then it should have been included then. I am going to assume that this specific student had began to use photographic methods as her research began to evolve. I think, in this case, publishing the photographs without the participants’ approval is out-of-line. In a perfect world (as constructed by REBs), then she should have sought approval for such data collection after she realized that this would become a rich medium of data, and before capturing the first photograph. This is, of course, made more difficult by the infrequency with which the REBs sit and review cases.

    Given the current state of REBs, she should return to the REB to seek an amendment to her current certificate. However, I fear that the approach taken by the REB would be punitive, rather than acknowledging the changing nature of research. I would like to hope that before capturing the photos (and we would have to take her word for it), that the researcher was able to capture the photos with the participants’ full permission and an understanding of the power imbalance caused by such a request of her participants.

  4. In the studies that use emerging design, it is given that data collection methods are changing. The researcher did nothing wrong just by using new methods not included in the original proposal. However, the important question is if the change may affect the welfare of the participants, the level of the risk, if confidentiality may breached, etc…

  5. I agree with Lisa, an option would have been to include other methods of data collection in the original proposal, however I am curious as how she even took those pictures without having previous consent? As far as I know research participants are entitled to be informed of the details of data collection methodology and have the right to accept the method or not. How come this student took pictures without having previous consent?

  6. There is no reason to assume she didn’t have the consent to take pictures, but the researcher did fail to get written permission and this was not approved as part of her original research proposal.

    There is a distinction between active and passive consent (an idea that actually applies to Shathel’s experience)… passive consent is not seen favorably by most IRBs, but it makes some common sense that in the context the negotiation about how participants participate can occur.

  7. I was thinking that participant confidentiality may be maintained, and the impact of the photos may be maintained, if the researcher described the photos using words rather than publishing the pictures. I assume the researcher believes the photos tell a story, so perhaps she could do her best to invoke the reader with an image rather than provide it to them directly.

  8. It is possible to amend a proposal, and that would have been one strategy in this case… but sometimes those amendments can be quite time consuming.

  9. If these photos are as important and potentially influential as the researcher suggests, I think that taking the time to get the proper approval/consent is essential. The negative repercussions for both the researcher and participants could be significant. This may be a good example of where a more flexible review board could help this researcher reflect on her research and move forward in a more timely fashion.

  10. I do believe that the photographs can have an amazing impact that 1) cannot be replaced by words, and 2) that would be significantly reduced by blurring faces . So would the photos have the same impact if confidentiality/anonymity was maintained? Will publishing the photos benefit participants more than the harm they may cause? I know other people have wondered about how she got the photos, and I wonder about whether she started off using them for one purpose, then reconsidered using them for another purpose. In which case, she may not have participants’ consent to actually publish the photos. If I were a participant I would be very upset if she said she was going to use the photos for her files and she ended up publishing them, especially given the sensitive nature of her study. I don’t think she should publish them.

  11. Ellen, I like your idea of including a thorough description of images rather than including the images themselves in order to avoid time consuming amendments to proposals. If the images cannot be effectively described, tactics that increase the anonymity of photographs may be used such as blurring of faces, conversion of photographs into drawn images, and removal or blocking of visual markers. Can photographs be altered and used in these ways without resubmitting proposals?

  12. If consent and assent (even if passively) was given to take the photos then I don’t think she did anything unethical. However, with the current IRB system, it seems that putting forth an amendment, although time consuming, would be most ethical. I’m not even sure that it matters that the pictures were quite revealing (specifically of children/families and including physical violence). If this was something that evolved for the researcher and there was a possibility that the pictures could now be a part of research, she may have been able to apply to the IRB as she was taking them, not near the end of her project. Depending on the results of approval, the researcher would further have to decide whether it would be beneficial to include the photos, even if they have to be altered, to protect those involved as @Nikki describes. I can also appreciate @Ellen’s idea of describing the photos instead of including them, if the approval from the IRB is too timely.

  13. I too like Ellen’s idea of using description of images rather than including the images themselves. Perhaps the researcher can apply to get the photographs approved in the event that she wants to use them in future publications. This certainly speaks to the bureaucracy impeding the process that Dyck and Allen reference. I think this particular case study is a nice reminder of covering all of your bases in ethics, in the event that you want to make changes along the way.

  14. Though it is understandable that changes in data collecting methods occur during the research process, and it should be further contemplated to what extent the ethical boards should intervene the research process, I think in this case, the researcher should be more careful about confidentiality of the participants. The question “How would I feel if this is made public?” (in the handout “Habits of mind for ethical practice”) seems to be a good starting point here. As noted in the reading, “research that involves visual methods….require special consideration regarding anonymity and confidentiality” (Freeman & Mathison, p. 50). If I was in the researcher’s situation, I would consult with participants if they agree to publish those pictures and ways to protect participants’ identities (such as, presenting the pictures as fuzzy as possible?)

  15. Leaving aside the permissions conundrum for the moment, there are various ways to use photos and maintain confidentiality–certainly blurring faces is one, another is to ‘cartoonize’ the photos so that they conceal identity, another is to make line drawings from photos. But putting black blocks across the eyes is NOT a good solution… too much like cheap porn movies!

  16. Taking the role of the participants in these pictures helps me to think about this. Clearly the researcher has not obtained consent from the participants to publish their pictures, nor has she obtained approval for this methodology – the latter I would not fault her on. It is easy to see how one may come up with “new and improved” methods as one proceeds further and deeper, but I would not like to see these published without obtaining consent – after the fact consent may be possible. However, it is still a bit unsettling if these photos contain images of children. I wonder, if I assent as a child, how I will react seeing these images as an adult? Will this cause me unnecessary harm? I would recognize that has a child I was in agreement and would be consoled by that but still may want them redacted. As a reader I would be satisfied with descriptions in which anonymity is maintained.

  17. In general, and we are told to do so in our research as well, it might be a good idea to ask for permission to take photographs anyway just in case one decides to use them for analysis or publishing, of course by doing so one risks losing some participants who are not ok with that. The other issue here is anonymity; anonymising the images might reduce their expressive power in a way that defeats the researcher’s purposes. However, not doing so is a clear infringement of confidentiality, especially since there are exhibitions of violence that might be stigmatizing to those families. So I think if she stills wishes to publish these images she needs to solicit the consent of subjects in these photos, and ask if they wish to be anonymised or not. Who knows, some might say they are ok to publish as they are.

    I don’t think the researcher did anything wrong by including this method later on in the research. In fact, this is one of the most frustrating issues in ethics approval: there is no consideration for the evolution of research that happens naturally in the process. It is normal, actually crucial, for researchers to reflect and modify their research paradigm and methods as they see fit through the research experience.

    It might be that the researchers is adopting a utilitarian approach since the publishing of these photos will contribute to the general good by empowering the important contributions in that area.

  18. Having to use or amend research methods and documentation is a reality for researchers, as one cannot predict the future; however, publishing photographs of study participants is not acceptable. As the photos have already been taken, study participants might feel additional pressure to sign a waiver, especially if it is obvious of the importance of the image. Also, even blurred photographs can be re-manipulated, thus showing the original image before it was blurred and there is always the possibility that technological advances could uncloak any attempts at retaining anonymity. This could not only be psychologically damaging to the participants but also could put the participants at significant risk, simply due to the nature of the research. Then again, other types of images could be created, such as drawings or other representations of the original image. I agree with Kate that a more flexible review board could have assisted the researcher with obtaining written consent from the participants at the initial stages of photographic documentation.

  19. I’m curious – I have seen multiple articles written from the data of one case study. If the research was published without using the photographs, but later, written permission of the participants was obtained to publish the pictures, would future writing about this already conducted research need to be approved by the IRB?

  20. @ Sandra: I was just thinking about the “black blocks across eyes” that I’ve seen in musuem exhibition depicting war crimes – the black blocks to me seem to diminish the identity of the person in a way that ironically takes away the respect that anonymity is meant to preserve!

    Assuming permissions are granted by the IRB, I think there is still a part to play for the researcher to consider if and how including the photos is still ethical. The discussions in the thread here seem to show the tension between the utilitarianism perspective (present the photos in as impactful a way as possible for the purpose of the research) and the deontology perspective (consider if presenting the photos is even ethical or not – regardless of whether the participants have given permission).

    Even if the participants have given permission, and even if there are ways to make the participants less identifiable, the researcher has the authority to decide not to include the photos if he/she decides that there may be repercussions beyond the individual’s well-being: e.g. harm to the community). So it all seems very context-specific (what the pictures really portray), and in the end, if a real dilemma presents itself to the researcher (based on his/her values and perspectives), the virtue ethics perspective seems to be required where wisdom is exercised for the particular situation.

  21. Back in the olden days when disposable cameras were in their heyday I was riding the bus in Saskatoon. A teenage kid was snapping photos of his buddies. At the next stop a tall man with a very intense look about him walked by the boy on his way to the door, grabbed his camera and said “you don’t take my picture” and crushed the camera under his foot. We don’t know the circumstances of other people. Just because you can take anyone’s picture or video these days doesn’t mean that you should. Maybe this guy is a political refugee. Maybe in his culture publishing his picture has implications that we have no notion of. I think its unethical, and I think that as a researcher, her reputation could be tarnished if she does not take appropriate measures to ensure her published work is ethical.

  22. Good point Joanna… just because we can do something (publish the pictures) doesn’t mean we should do it. That really is an important distinction between what is institutionally/bureaucratically defined as right researcher behavior and what might be considered ethical researcher behavior that obviously requires more context to determine. Someone (Nikki??) mentioned the idea of a whole person and I think that does come into play when researchers define something as an ethical dilemmas and look for a proper course of action.

  23. “She has important theoretical contributions to make in the area of evolving cultural definitions of parent-child relationships among the subpopulation she studied.”

    Her contributions are described as “theoretical”; although they may contribute to further understanding relationships in this subpopulation and possibly in catalyzing improvements for children and their families I am not sure that the benefit of publishing the photos outweighs the potential harm to the participants. Maybe the risk is minimal – this case study gives little detail about the photos, but maybe it does or will cause undo psychological harm.

    The photos are “evocative” sure, but maybe she is underestimating the power of words, or other creative illustrations as Sandra suggests.

  24. Christine brings up a good point – with increasing use of computer technology, re-identification of photos that are made anonymous is becoming increasingly possible. What is considered to be the best method for creating anonymity in photographs? It seems like the medical field loves to go with the black blocking that was previously equated to cheap porn movies!

  25. Wouldn’t the journal the researcher is submitting to question if permission was obtained before publishing any photographs? I assume they would want to avoid liability by doing that. So aren’t there some other checks and balances in the system other than an IRB? Also, wouldn’t an editor have to agree that the pictures were as necessary as the researcher thinks and agree to include them in a publication even if permission has been obtained? Or are academic journals not like that (with the editor having some input)?

  26. This is a bit of an aside, but an important issue… we have been assuming that confidentiality and anonymity are essential. Largely because the IRB process tells us so. While in the case of the photos of children this might be important, it isn’t always. Some research participants don’t want to be anonymous… they want their story told. It also begs the question of how we think about context when we anonymize research settings and participants… are we stripping the research of some of its power?

    Often we promise confidentiality and anonymity when we cannot deliver on the promise. For example, I suspect with very little effort I could identify the high school Pascoe did her research at… I have had students do this in previous classes… I have had a student in class who was in a school about which we read! Frequently, our own identity is the biggest threat to maintaining confidentiality and anonymity.

  27. Good questions… the peer review process for journals don’t usually work well as this kind of filter. Lots of examples of falsified results published in the sciences and medicine. Judgements about the quality of a manuscript are based more on the theoretical and empirical coherence, the validity (however that is defined), and veracity of the work. There is a high level of trust that researchers will be ethical and honest in reporting their work.

  28. @ Sandra: I agree with you on the anonymity issue, I was thinking the same about the school in Pascoe’s book. I think that in many instances the ethics issues boils down to strict legal liability. Although the school can be easily identified from the context in the book, what matters was that she did not use actual names of people or places. It is the post-positivist legal view that only facts matter, and the context is ignored even when it is pointing a thousand fingers to the actual institution.

  29. I think that at some point we need to “trust” that researchers will be ethical and honest in reporting their work. The fear of unethical behaviour is what started off the first blog discussion–and it doesn’t appear we have solved the problem by monitoring research projects (IRB).

    Going back to the “habits of mind” handout (@Junghyun), I think as individuals we all may have different ethical perspectives which lead us to make different ethical decisions in the end. This lack of clear cut right/wrong is exactly why dilemma’s are dilemma’s. In my opinion, the importance of researching ethically lies in the thought behind the ethical choices you make rather than in the decision itself (e.g, the process of the “habits of mind” is just as important as the decision you make in the end).

  30. Regarding the photographs, as has been mentioned, it would have been ideal if the researcher had included something in her proposal about the possibility of alternative methods of data collection. However, I think the more interesting issue is what the researcher can do as she proceeds. I believe it would be important for her to consider the implications of each photo on the person(s) photographed and on the community. I would suggest being very selective in the photos chosen for potential publication; considering the benefits of the message conveyed compared to the potential costs to the individual(s). Perhaps the photos that present the most risk (e.g. those with evidence of physical violence) would not be included, yet the message could be conveyed through other images. Then, it would be essential to have a discussion with the person (and possibly the guardian) photographed about the possible implications of the publication of the image. The discussion needs to go beyond simple permission to publish and needs to ensure informed consent. I believe it is very important to have participant input on the findings you intend to publish to ensure you are not misrepresenting the information that has been shared with you.

  31. I wonder if trusting the researcher entirely without any “safeguards” is possible as a “system”, and not just as a personal preference. As Maryam’s example suggests that even with IRB’s approval, there likely at least some evidence of a lack of attention or priority to professionalism/adherence to ethical standards. Just wondering. Not that monitoring is a solve-all solution, but should there be something in addition to “trusting”?

  32. The confidentiality issue is an interesting dilemma. I think confidentiality is something that is based in a very Western, post-positivist paradigm. I think it would be difficult to get through an IRB without stating the measures you were going to take to protect confidentiality; however, there are instances where anonymity takes away from the impact of a story and/or where despite the measures taken to ensure confidentiality we cannot maintain it. I definitely believe there are instances where identifying participants (with their consent) could be empowering and may enhance the impact of the research in general.

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