UNESCO is leading a global conversation on how best to regulate the Neurotechnology industry. This emerging sector is still something of a ‘black box’. Little is known about how decoding and manipulating our brains might impact us. There is a risk it may even fundamentally distort our sense of personal autonomy.

In the last two decades Neurotechnologists have made important advances which enable them to help sufferers of treatment-resistant epilepsy, live with their condition. Since the early 2000s clinical trials of devices which issue a warning signal when they detect that an epilepsy attack is imminent have been conducted. This signal allows the sufferer time to lie down on a bed or sofa, to ensure they are not badly hurt or injured when the physical convulsions of the epilepsy attack begins.

The device is comprised of a silicone strip covered in electrodes which sits on the surface of the patient’s brain and is connected by wires laid under the skin to a machine implanted in the patient’s chest which records data on neural activity, and can then issue a warning beep when it detects the coming of an attack.

When the trials began, many epilepsy sufferers volunteered to act as guinea pigs for the trials of these devices, excited about the life-changing possibilities of such a scientific breakthrough.

But although allowing epileptics control over their own personal safety is a highly desirable outcome, it can also come at a cost to the individual. Some who have taken part in clinical trials report a loss of personal identity and autonomy which can be profoundly disturbing.

Hannah Galvin’s story sheds some light on this issue

Hannah was 16 when she developed epilepsy. Her seizures became so strong that she was forced to give up on her dream of becoming a ballet dancer. To regain control of her life, she opted to have an invasive neurological device installed inside her skull on the surface of her brain. But the device didn’t behave as she expected, and she soon felt she had ‘someone inside her head.’

When do you first hear there could be treatment that included neurotechnology?

I still wanted to be a ballet dancer. I would have jumped at anything, just for the opportunity to get my dance career happening again. The brain operation was supposed to fix me. It was an EEG (electroencephalogram), but on the brain, not just on your head. Then there was a tube down your throat to a device in your chest that would gather the data. And there was another a device outside the body that had three lights that would beep and flash red before a seizure. So you knew when it’s time to go and lie on a couch.

What were your first impressions when you had it fitted?

I didn’t like it from the get go, because it was flashing too much for me. I didn’t realize how many seizures I was having. The device would beep for me every two seconds. The red light went on, I’d take the device out and turn it off, and it just went off again. It made me depressed at university. I didn’t tell any of my lecturers that I had it, I started hiding my epilepsy. And the depression got worse and worse and worse.

I felt like there was someone in my head, and it wasn’t me. And I just got more and more depressed. I didn’t like it at all.

When did you think about getting it removed?

I didn’t believe that it was working, because it was going off all the time. I went into hospital, and they checked it, and the device was fine. That’s when they realized how many seizures I was actually having. When I realized I was having more than 100 seizures a day, I wanted to throw the thing out the window. I just hated it, and wanted it gone.

With the amount of time it was going off for me, I felt like I had two choices. I could follow the device and rent a hospital bed for life and just lie down forever. Because that’s what this device is saying, my life has gone. Or I could throw it out the window and say, I’m going to live my life still, and have a few seizures along the way, but have a life as well.

What advice would you have for other epilepsy patients who are considering neurotechnological treatments?

I would really say to someone who had epilepsy as badly as me, it’s not the right thing for you. It will just make you feel like it’s not worth living a real life anymore. I think that there  needs to be a bigger conversation about the negativity. And there needs to be a lot more said before somebody makes that decision.

But I would say I’ve heard positive stories as well, from people who felt the treatment changed their lives. For someone who has one seizure every three months, I feel maybe it would help because they could go and sit on a couch. But if you’re having as many seizures as me, you’ve got to think of the negatives as well. You’re going to just constantly, suddenly have had this sound coming out of you. You’re constantly going to have a someone in your head, and it’s not you.


Source: unesco.org