Ethics of Memory Research: Honoring Privacy with Dr. Peggy L. St. Jacques

By Erin Morrow

This post is the second in a series featuring interviews that will explore ethical issues surrounding research in memory science. Each interview will highlight a specific theme on this topic with the insights of a research professor in psychology or brain science. The series will consist of five interviews over the span of a year.

Image by geralt via Pixabay

As summer neared its peak in Atlanta, I spoke to Dr. Peggy L. St. Jacques, Assistant Professor and Canada

Research Chair of Cognitive Neuroscience of Memory in the Department of Psychology in the Faculty of Science at the (much cooler) University of Alberta. St. Jacques’s expertise lies in the neural mechanisms of autobiographical memory (AM), which her lab explores through both functional imaging and behavioral techniques, including data collection using wearable technologies. Her current research interests lie in understanding the influence of visual perspective in AM on regional brain activation, with the help of virtual reality devices.

Our understanding of how AMs are represented in the brain has improved significantly over the last two decades with the use of traditional imaging approaches as well as more novel techniques (e.g., multivoxel pattern analysis). As frontline researchers like St. Jacques uncover more about the brain activity underlying the memories of our pasts — among which lie our greatest triumphs, our most meaningful life events, and our deepest wounds — some have raised concerns about others’ access to this privileged information. Here, our conversation exploring data privacy in memory began — first, from the perspective of neural data.

Do we know enough about AM to decode the memory of a past event from brain activity? Within the burgeoning field of neurolaw (which considers current and emerging applications of neuroscience in legal settings), the ways in which scenarios like these might materialize are discussed rigorously. A classic example imagines a criminal suspect forced to undergo a brain scan in the pursuit of a damning memory trace (see e.g., No Lie MRI for a commercialized attempt at ‘lie detection’ using neuroimaging). Although scenarios like these may sound improbable, classifiers have already been shown to reliably discriminate between representations of different object categories in the brain, as well as emotional states. Do these findings merit ‘mind-reading’ comparisons? Is extending these techniques to our memories a possibility or a pipedream? If the former, might AM imaging data belong to a sensitive category deserving of special protections in research?

Image by The Medical Futurist editors

St. Jacques offered insights on these questions from her perspective as a cognitive neuroscientist at the forefront of memory research. Highlighting scholarship from the labs of Eleanor Maguire and Jesse Rissman, she noted advances in similar classification techniques that can detect certain features of individual memories, such as whether they might be more remote (versus recent) in time. Although researchers such as Rissman insist that application outside of the research context is currently unwarranted (see related concerns with imaging data), such discoveries nevertheless lead to speculation as to what neuroimaging research may reveal about personal information. In response, St. Jacques casted doubt on how feasible it is to reliably decode the intimate details of a memory. Our memories are inherently multidimensional and complex, more so than the visual representation of an object, for instance. As such, capturing the less tangible aspects of an AM, such as its emotional salience and — in particular — its dynamic nature over time, will prove much more difficult, she explained. For this reason, in the eyes of St. Jacques, identifying an individual from their functional imaging data remains close to impossible for now in research. As for the future? It’s worth a thought, with implications to everything from consent to data storage — but not yet, she held.

However, neural data is not alone in attracting ethical scrutiny — AM studies also frequently collect sensitive information in the form of personal narratives and events. In a 2011 study, St. Jacques and her colleagues had each of their 23 participants don a wearable device known as the Microsoft SenseCam. These devices automatically snapped thousands of photos of each participant’s life over the course of a week for use as retrieval cues, or prompts, in a memory test later in the study. While these technologies offer more personalized and verifiable memory cues (e.g., compared to generic cues or those created by participants verbally recounting their past), they can also represent an invasive presence in the lives of study participants and those around them. In fact, while St. Jacques was testing the device herself, she noted that it was easy to forget she was wearing it, and that uncomfortable situations could arise when a photo was taken and she preferred it wouldn’t have done so. What privacy considerations should exist for these emerging research tools?

Image via Piqsels

To this end, St. Jacques stressed the importance of wearable data collection technologies to contain

a ‘privacy button’ — one that clearly and visibly pauses photo capture — such as that on the SenseCam. Training participants on this button, as well as ensuring procedures exist to alert family members and others that may be caught on camera in a private setting, are also essential. By giving participants choice over the data they would like to record, these controls restore autonomy that might have been compromised by unregulated capture. Equally important, St. Jacques added, are mechanisms by which participants can opt to delete unwanted photos post-hoc, without requiring researchers to physically view these items. And of course, classic research ethics protections apply here, too, such as erasing all data after a certain time frame. Together, these considerations assist in honoring that neuro-privacy is not the only privacy concern critically examined in memory research.

As we’ve seen above, autobiographical memory is a decidedly personal matter. AM studies can unearth troubling experiences from participants’ pasts and can lead to discomfort even if the subject matter is not explicitly emotional. In the case of studies with an imaging component, participants’ uneasiness may be compounded by the knowledge that the neural activity associated with their memories is also being pored over. For this reason, St. Jacques explained that she feels one of her greatest ethical responsibilities is to ensure that participants feel comfortable sharing the memories they choose to disclose. The simple gesture of keeping a tissue box in the lab, for example, can make all the difference. During debriefing, she and her lab team offer counseling resources to participants, and in addition to their required ethics coursework, all research assistants are trained on best practices for handling sensitive topics and situations. Emotional intelligence is a necessity for this kind of scientific inquiry.

Overall, speaking with St. Jacques both dispelled myths and upheld imperatives for ethically sound AM research. A key theme emerged: autobiographical memory — integral to our identities and lived experiences — is both potentially sensitive and inherently private. Although memory scientists are not yet able to meaningfully decode past events from brain scans, St. Jacques affirmed that there are practical matters of privacy that should be addressed in the present. These considerations include intentional privacy features in research technologies used to capture our daily lives, training participants how to take advantage of these features, acknowledging relational privacy, and fostering a research environment in which participants are adequately and thoughtfully supported. As St. Jacques underscored, AM researchers deal in precious data — data that represents countless stories, both transformed and preserved over time. When we see these stories as more than data, we get closer to conducting AM research responsibly.

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Erin Morrow is a fourth-year undergraduate student at Emory University majoring in Neuroscience and Behavioral Biology. She is the lead research assistant at the Hamann Cognitive Neuroscience Laboratory, where she conducts memory research and neuroimaging analysis. Erin also holds positions with the American Journal of Bioethics Neuroscience and the International Neuroethics Society. As she progresses in her career, she hopes to integrate her pursuits in neuroethics with her academic aspirations in research and engagement in volunteerism.

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Morrow, E. (2021). Ethics of Memory Research: Honoring Privacy with Dr. Peggy L. St. Jacques. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2021/08/ethics-of-memory-research-honoring.html