Knowing Your Body Best: The Role of Clinicians and Neural Data in Patient Self Perception of Illness

to have been agitated, prone to anger) is gone and they attribute that to medications. It’s a somewhat perplexing attribution. We would have wanted to hear more about what factors they appealed to in reaching that conclusion. We appreciate the faithful reporting of this claim made by the interviewees; still, taken in the context of the earlier caregiver quote, we wonder about the certainty of their conclusion. Perhaps our criticism is just a cautionary note about interpretation and confidence in conclusions derived from qualitative work. The rich ethnographic data offered by the authors provides a wealth of insight regarding the experience of RNS users. Still, it’s not apparent to us that such evidence clearly leads to the conclusion that “while none of our participants wholeheartedly attributed substantive changes in their personality or self-perception to the RNS device and stimulation, many did attribute such changes either to the experience of epilepsy or the side-effects provoked by medication” (39, emphasis added). Perhaps the authors meant for the emphasis to be on “wholeheartedly.” But that’s not the standard our prior work suggests is apt. Rather, we wonder if agential ambiguity (involving a distinct lack of wholeheartedness) might be a more fitting description of the range of sentiments expressed by participants and their loved ones. We look forward to continuing these important explorations of user experience with neural devices, and wholeheartedly (!) agree with the authors that “understanding the process of changes in personality or self-conception requires investigation into both the treatment’s medical and social context” and that doing so will “require longitudinal, experience-near accounts within and beyond the clinical setting” (41).