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.
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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
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
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.
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