#neuroethics — Public Fediverse posts

While theoretical concerns have been raised by neuroethicists, our team is the first to ask patients with such implants. Their stories don’t support this concern, but raise novel ones.

🔓: https://www.tandfonline.com/doi/full/10.1080/21507740.2021.1958100

1/ We studied patients receiving responsive neurostimulation for refractory #epilepsy. This is the first “closed-loop” brain modulation system in routine clinical practice. Patients were recruited before surgery, observed at clinic visits and followed over 1y post-op. In one remarkable case, we observed a seizure interrupted by the device mid-appointment:

Suddenly, the patient interrupted the conversation and with a distressed appearance asked if others in the room heard laughing voices. She cringed and covered her ears, and her caregiver and the medication-epileptologist comforted her. The medication-epileptologist asked the patient to repeat certain phrases to assess whether her speech was impaired and track the progress of the seizure. The RNS-epileptologist pointed out that he could activate the device stimulation to try to interrupt the seizure, and after a brief consultation with the medication-epileptologist proceeded to do so… As she struggled to find the right words to describe what she was hearing and feeling, the RNS-epileptologist continued to adjust device settings. After several minutes, she visibly calmed and then confidently and clearly announced that the seizure was over. Everyone in the room was relieved.

Unfortunately a subsequent interview revealed that seizure control and the patient’s excitement were not persistent:

Caregiver: – hallucinations started.
Patient: And I said, I think it’s coming back or something.
Caregiver: But by then your words were—your speech was really in the toilet.
Patient: Yeah, and that was kind of – I was – I just thought, no, not already; you know? I – because I – because I thought it was going to stay for – forever; you know?…I said to [caregiver], but, you know, it’s like when Christmas is over. It’s like when Christmas is over.

As others have noted, concerns about changed sense of self with #neurotech must be evaluated in context of #chronicillness. Epilepsy itself significantly disrupts one’s sense of control, and many patients had experienced personality changes they attributed to meds.

A fascinating and unanticipated positive finding was how recorded data from the implanted device changed perceptions of illness. Patients and caregivers responded with great interest to the data; some were fascinated and others felt some unease:

That was definitely something else. Creepy. A heartbeat? I can watch a heartbeat, and I can feel the pulse for that image. But brainwaves? Watching brainwaves grossed me out… It’s because it’s mine. It’s creepy because it’s mine. If it was somebody else’s, it wouldn’t be as creepy. But, it’s because it’s mine.

In some cases, recorded data affirmed and elaborated on patients’ subjective experiences of illness; however, discordant data could call patients’ illness experiences into question. For some, the data supported an electrographic over an internal conception of their disease:

I used to think I could really tell the difference between an aura and a seizure. Especially if I didn’t have a blank out or anything… I have auras a lot and I don’t write them down, whereas I’ve written down every seizure that I’ve had, I think, for six years… I think maybe – and they call auras a seizure even though I feel like I can tell the difference. Now, I’m thinking that actually it can just be an aura and this device will record it as a seizure. So, probably I should write down every aura but I just have them a lot.

This has been an incredible project, long in the making. Major thanks to first-author Toby Haeusermann and the entire team, and of course to the patients, caregivers and clinicians who allowed us to observe in this intimate way. #neuroethics #brainimplants #neurotech