Evaluating the ethics of a case study involving fear: A class discussion

[sue_frantz]

Researchers conduction case studies, like any other research methodology involving humans or non-human animals, must address ethical considerations. One of my favorite case studies was done with a person—identified in the literature as SM—who has Urbach-Wiethe (pronounced Er-bock Wheat-ah) disease (Adolphs et al., 1995). While the disease has a number of effects, the most striking is that it adds calcium deposits to the amygdala, rendering it inactive. You can see an MRI of SM’s brain at BrainFacts.org showing her missing amygdala (McMurray, 2020). Class discussion of the ethics of this research fits nicely in the biopsych chapter.

If you’ve read Sam Kean’s book The Tale of the Dueling Neurosurgeons, you’ll recognize SM from the amygdala chapter. If you haven’t read The Tale of the Dueling Neurosurgeons, it is a must-read. Your coverage of biopsych will be the better for it.

Before class, ask students to read SM’s freely-available, three and a half page case study (Feinstein et al., 2011). Incidentally, this is just one paper. SM has been participating in research for decades. Here’s a more recent (and freely-available) study (Cardinale et al., 2021).  

Tell students they’ll be reading a case study of a woman who, due to damage to her amygdala, experiences no fear. “To provoke fear in SM, we exposed her to live snakes and spiders, took her on a tour of a haunted house, and showed her emotionally evocative films” (Feinstein et al., 2011, p. 34). If that quote isn’t enough to get students to read the article, then I’ve got nothing. Also ask students to read the supplementary material available at the end of the article (direct link for the download). This document describes how SM experienced fear up until about the age of 10, which is the age that is typical for Urbach-Wiethe disease to damage the amygdala enough that fear disappears. It also includes an interview with one of SM’s children who reports a memory of his mom picking up a massive snake as well as SM’s description of a time when a man held a knife to her throat and threatened to kill her. In my experience, an article’s supplementary material is never this interesting.

Now let’s tackle the ethics. While the paper does not mention IRB approval, we can conclude that they must have had it. In the Acknowledgements section near the end of the article, the researchers note that they had a few National Institutes of Health (NIH) grants. To received an NIH grant, researchers must have IRB approval. Here is the specific section of the federal code that determines what an IRB should be evaluating in a study (Office for Human Research Protections, 2024).

While the federal code for IRB approval includes informed consent, minimizing risk/harm to participants, and maintaining privacy of participants, we can find some additional information about each of these in the article and its supplementary materials.

Ask students if they found any reference to informed consent in the reading. (Informed consent is mentioned twice. First, on page 34 of the article: “SM provided her informed written consent to participate.” Second, at the bottom of the first page of the supplementary materials, the researchers write, “[O]ur informed consents mention the overarching goals of advancing our knowledge with regard to general concepts such as emotion, memory, and social behavior, but never specifically state our interest in probing fear.” We now know that they do get informed consent from SM.)

Ask students if they have any evidence that the researchers are keeping participant information confidential. (Because we never learn who SM is, the researchers are maintaining her privacy by keeping information about who she is confidential.)

Ask students if they have evidence that the researchers protected SM from harm. (On page 34, the researchers write, “For ethical reasons, we chose three situations capable of inducing fear with little to no risk of direct harm to the subject.”)   

Ask students if deception was used in this case study. It’s worth noting that the federal code for IRBs does not mention deception (Office for Human Research Protections, 2024). The American Psychological Association (APA) ethics code (8.07), however, does (American Psychological Association, 2017). The APA does not disallow deception, but the ethics code dictates that deception must be used with careful consideration and participants should be told about the deception, ideally, at the conclusion of the study.

Without seeing the informed consent form given to SM, we cannot know for certain that deception was not used. However, given that the researchers list on page 34 the three situations that SM would be exposed to and immediately after state that she provided her informed consent, we can reasonably conclude they told her what they were going to be doing.

Ask students if they believe the researchers debriefed SM following this study. Debriefing is not mentioned in the article nor is it required by the federal code for IRBs (Office for Human Research Protections, 2024). While the APA ethics code asks that researchers debrief participants, they give researchers an out in 8.08(b): “If scientific or humane values justify delaying or withholding this information, psychologists take reasonable measures to reduce the risk of harm” (American Psychological Association, 2017). We know that SM has been tested many, many times in the last 30 years or so. The researchers tell us in their supplemental material that their informed consent forms say that they are testing emotions generally but not fear specifically. They do this to avoid the chances that SM will change her behavior to give the researchers what they are looking for. It makes sense that the researchers wouldn’t tell her in a debriefing after each study that they are studying her experience of fear specifically. That would clue her in that the next study would also be about fear. We can argue that 8.08(b) applies. In order for the future research with SM to be of scientific value, she cannot know that the researchers are specifically testing her for fear.

To conclude this discussion, ask students to identify other potentially fear-inducing situations researchers could use. And, more importantly, what fear-inducing situations carry too high a risk for harm? (Would ziplining be okay? Bungee jumping? Parachuting out of an airplane? How can researchers evaluate such activities for risk?)

References

Adolphs, R., Tranel, D., Damasio, H., & Damasio, A. (1995). Fear and the human amygdala. The Journal of Neuroscience, 15(9), 5879–5891. https://doi.org/10.1523/JNEUROSCI.15-09-05879.1995

American Psychological Association. (2017). Ethical principles of psychologists and code of conduct. https://www.apa.org/ethics/code

Cardinale, E. M., Reber, J., O’Connell, K., Turkeltaub, P. E., Tranel, D., Buchanan, T. W., & Marsh, A. A. (2021). Bilateral amygdala damage linked to impaired ability to predict others’ fear but preserved moral judgements about causing others fear. Proceedings of the Royal Society B: Biological Sciences, 288(1943), 20202651. https://doi.org/10.1098/rspb.2020.2651

Feinstein, J. S., Adolphs, R., Damasio, A., & Tranel, D. (2011). The human amygdala and the induction and experience of fear. Current Biology, 21(1), 34–38. https://doi.org/10.1016/j.cub.2010.11.042

McMurray, C. (2020, December 9). Patient S.M. https://www.brainfacts.org:443/in-the-lab/tools-and-techniques/2020/patient-sm-120920

Office for Human Research Protections. (2024, June 11). 2018 Requirements (2018 Common Rule) [Page]. https://www.hhs.gov/ohrp/regulations-and-policy/regulations/45-cfr-46/revised-common-rule-regulatory...