WEBVTT - An Off Switch For Depression? 0:00:00.160 --> 0:00:03.440 A quick note before we start the show. This episode 0:00:03.480 --> 0:00:07.920 is about depression and treatment for depression. It contains references 0:00:07.920 --> 0:00:11.640 to suicide. If you or someone you know is struggling 0:00:11.680 --> 0:00:14.360 with thoughts of suicide, we have links to hotlines and 0:00:14.400 --> 0:00:15.920 resources in our show notes. 0:00:17.600 --> 0:00:23.239 I am completely dependent upon electricity as medicine and there 0:00:23.280 --> 0:00:26.000 will never be a point in my life where I 0:00:26.040 --> 0:00:30.440 can quote go off the grid because I can never 0:00:30.640 --> 0:00:34.360 be without electricity for my own survival. 0:00:35.680 --> 0:00:39.800 Brandy Ellis calls herself a cyborg. She has an electrical 0:00:39.840 --> 0:00:43.360 implant in her brain twelve years ago. Before she got 0:00:43.360 --> 0:00:47.120 the implant, she often struggled with depression. She says it 0:00:47.159 --> 0:00:51.280 has made her feel more like herself. Brandy was first 0:00:51.280 --> 0:00:55.160 diagnosed with depression when she was twenty. At that time, 0:00:55.320 --> 0:00:58.440 she slept twenty hours a day and she cried often 0:00:58.520 --> 0:01:02.560 when she was awake for no reason. So she saw 0:01:02.600 --> 0:01:05.720 a therapist and went on medication, and she felt better 0:01:06.080 --> 0:01:09.720 like herself again. She consulted with her doctor and decided 0:01:09.760 --> 0:01:13.400 to stop taking medication, but a few years later her 0:01:13.440 --> 0:01:17.319 symptoms came back. Starting back up with medication and therapy 0:01:17.440 --> 0:01:21.039 pulled her out of it. The depression lifted. This cycle 0:01:21.120 --> 0:01:23.679 went on for over a decade, but when she was 0:01:23.720 --> 0:01:27.600 thirty two, the depression came back, and this time it 0:01:27.640 --> 0:01:28.320 felt different. 0:01:30.080 --> 0:01:34.880 I wasn't sleepy, I was anxious, and I had insomnia, 0:01:35.720 --> 0:01:40.240 and I was less weepy and more cranky. 0:01:41.360 --> 0:01:44.160 She had assumed her depression would resolve like it had 0:01:44.280 --> 0:01:47.319 every other time, once she found the right combination of 0:01:47.360 --> 0:01:51.200 medication and therapy, but for four years nothing helped. 0:01:52.280 --> 0:02:00.440 I tried over two dozen different medications of every conceivable type, 0:02:01.200 --> 0:02:04.040 and that is not counting all the various dosages of 0:02:04.120 --> 0:02:09.160 those medications and all the various combinations of multiple medications. 0:02:09.600 --> 0:02:12.960 Meanwhile, she couldn't hold a job. She moved back home 0:02:13.000 --> 0:02:16.840 to Dowray Beach, Florida, where her parents supported her financially, 0:02:17.840 --> 0:02:21.040 but not everyone in her life was so supportive. Some 0:02:21.120 --> 0:02:24.160 relatives told her that her depression was her own fault, 0:02:24.800 --> 0:02:27.760 that she was just being lazy. For the first time 0:02:27.760 --> 0:02:31.519 in her life, Brandy had thoughts of suicide. 0:02:32.080 --> 0:02:36.920 He never understood what it meant to be suicidal in 0:02:36.960 --> 0:02:40.320 any of my previous depressive episodes, and I refer to 0:02:40.360 --> 0:02:43.120 it now as my brain tried to kill me and 0:02:43.240 --> 0:02:44.959 I was trying to survive. 0:02:45.960 --> 0:02:49.600 As a last result, Brandy's doctors suggested she tried something 0:02:49.639 --> 0:02:54.000 called electroconvulsive therapy. It's a procedure where small amounts of 0:02:54.000 --> 0:02:58.080 electricity are sent through the brain to relieve mental health symptoms. 0:02:58.600 --> 0:03:01.760 It helped, but the relief only lasted for a couple 0:03:01.800 --> 0:03:05.440 of weeks. Brandy's doctors said that in order to keep 0:03:05.480 --> 0:03:08.079 her symptoms at bay, she'd have to keep coming back 0:03:08.120 --> 0:03:11.360 in for treatment every month indefinitely. 0:03:11.480 --> 0:03:16.040 And that was just something that I could not do forever. 0:03:16.600 --> 0:03:20.120 So it did look like I was going to be 0:03:20.280 --> 0:03:24.200 suffering like this for the rest of my life, and 0:03:24.280 --> 0:03:28.799 I didn't know how long I could survive that kind 0:03:28.880 --> 0:03:29.840 of life. 0:03:30.280 --> 0:03:33.680 Brandy's doctors said there was nothing left to try, but 0:03:33.800 --> 0:03:37.240 she wasn't ready to give up. She scoured the internet 0:03:37.320 --> 0:03:41.080 for other treatment options and did an online mental health 0:03:41.080 --> 0:03:44.760 support group. She read about a clinical trial that seemed promising. 0:03:45.560 --> 0:03:49.320 Researchers at Emory University were studying a type of treatment 0:03:49.440 --> 0:03:53.560 called deep brain stimulation. She said she didn't have high 0:03:53.560 --> 0:03:55.800 hopes that it could help her, but she thought it 0:03:55.880 --> 0:03:57.400 might be worth doing anyway. 0:03:58.040 --> 0:03:59.480 I felt like I was going to do the brain 0:03:59.520 --> 0:04:04.440 surgery and then it would not work, and I would 0:04:04.480 --> 0:04:11.160 still have this terminal depression and I would eventually die 0:04:11.520 --> 0:04:14.240 rather than continue to suffer. But I thought that I 0:04:14.320 --> 0:04:18.200 could be a data point that helped people who came 0:04:18.279 --> 0:04:18.760 after me. 0:04:20.800 --> 0:04:23.919 I'm Lauren and Rora Hutchinson. I'm the director of the 0:04:24.000 --> 0:04:28.320 Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. 0:04:29.040 --> 0:04:33.200 On today's show, we're talking about the revolutionary technology of 0:04:33.279 --> 0:04:39.240 deep brain stimulation or DBS. DBS is a highly effective 0:04:39.279 --> 0:04:44.160 treatment for neurological conditions in the rare instances that patients 0:04:44.200 --> 0:04:48.599 aren't responding to other types of treatment. But computer based 0:04:48.640 --> 0:04:52.279 implants can change more about the brain than the disease 0:04:52.320 --> 0:04:56.920 they're meant to treat, which raises all kinds of ethical dilemmas. 0:04:58.760 --> 0:05:01.240 So when it comes to the possib ability of altering 0:05:01.279 --> 0:05:05.960 our personalities by implanting electronics, where do we draw the line? 0:05:07.120 --> 0:05:10.400 Are we giving computers too much control over who we 0:05:10.440 --> 0:05:13.640 are when we allow them to alter fundamental human traits 0:05:13.720 --> 0:05:18.400 like our emotions? And if it's okay to change our moods, 0:05:18.600 --> 0:05:24.920 what about other things like our intelligence? From Pushkin Industries 0:05:24.960 --> 0:05:28.920 and the Johns Hopkins Berman Institute of Bioethics, this is 0:05:28.960 --> 0:05:29.920 playing god. 0:05:36.040 --> 0:05:40.479 This is a neurosurgical procedure that involves the implementation of 0:05:40.680 --> 0:05:46.039 thin electrodes that are, i say, like the thickness of spaghetti. 0:05:47.120 --> 0:05:50.479 This is Patricio Riva Porse. He was one of the 0:05:50.520 --> 0:05:55.000 researchers conducting the study that Brandy came across. These days, 0:05:55.040 --> 0:05:58.320 he's the director of the Treatment Resistant Depression Clinic at 0:05:58.360 --> 0:06:02.320 Emery's a lot of his time working on deep brain 0:06:02.440 --> 0:06:04.880 stimulation and explaining how it works. 0:06:05.680 --> 0:06:09.440 The electrodes is implanted with a canula that keeps it, 0:06:09.560 --> 0:06:11.800 you know, kind of rigid until the point where you 0:06:12.200 --> 0:06:13.000 hit the target. 0:06:13.600 --> 0:06:17.000 The electrodes, he says, empowered by a device that's similar 0:06:17.040 --> 0:06:20.880 to a pacemaker, which gets inserted under the patient's skin 0:06:21.120 --> 0:06:25.279 near the collar bone. Before researchers brought DBS to people 0:06:25.320 --> 0:06:28.680 with depression, they were already using it for conditions like 0:06:28.760 --> 0:06:29.880 Parkinson's disease. 0:06:30.800 --> 0:06:36.000 This idea came from that application into saying, well, what 0:06:36.040 --> 0:06:40.880 if you can deliver small amounts of electricity to specific 0:06:40.920 --> 0:06:46.280 areas of the brain to stimulate circuits that are related 0:06:46.480 --> 0:06:51.720 to mood and emotions towards the circus that control those 0:06:51.760 --> 0:06:56.480 behaviors and those thoughts. In Parkinson's disease. The usual targets 0:06:56.600 --> 0:07:00.240 that are chosen are the ones that are involved in 0:07:00.600 --> 0:07:05.039 treating the tremor or the rigidity, and in depression, the 0:07:05.120 --> 0:07:11.600 circuits are quite different. Different areas were chosen to stimulate, 0:07:12.000 --> 0:07:15.840 and it seems to be that patients with depression have 0:07:16.040 --> 0:07:21.040 an increase in the activity in that area. And the 0:07:21.080 --> 0:07:23.560 thought was, well, what if you implant an electro there 0:07:23.600 --> 0:07:25.840 and you deliver a lot of electricity there. What you 0:07:25.920 --> 0:07:29.400 do is you put that area in an inhibited mode. 0:07:30.040 --> 0:07:31.080 So he turned it down. 0:07:32.360 --> 0:07:35.240 Patricio says that by the time Brandy came across his 0:07:35.320 --> 0:07:39.360 clinical trial, there was already some published research showing that 0:07:39.440 --> 0:07:43.240 his theory helped promise A small study show that out 0:07:43.240 --> 0:07:47.559 of six initial patients, DBS helped four of them. After 0:07:47.600 --> 0:07:50.360 six months of treatment, they were no longer depressed. 0:07:51.360 --> 0:07:55.560 The satisfying aspect of deep brain stimulation and other implantable 0:07:55.960 --> 0:07:59.280 devices is that when patients get well, they stay well. 0:08:00.080 --> 0:08:03.320 Continuous delivery of small amounts of electricity, you know, as 0:08:03.920 --> 0:08:06.800 as simple as it may seem, it seems to be 0:08:07.200 --> 0:08:10.320 a treatment that is sustained over time. That's I think 0:08:10.560 --> 0:08:16.240 is what is so hopeful about these implantable neuromodulation techniques. 0:08:17.120 --> 0:08:20.280 He says, the procedure comes with risks too, like brain 0:08:20.280 --> 0:08:24.200 hemorrhage or infection. It is brain surgery after all. 0:08:25.840 --> 0:08:29.000 And then you have negative outcomes of what happens if 0:08:29.240 --> 0:08:34.160 treatment doesn't work right. These are patients that are very, 0:08:34.280 --> 0:08:39.680 very ill with depression for years. They have a much 0:08:39.720 --> 0:08:46.120 higher risk of suicide. And unfortunately, across the trials there 0:08:46.160 --> 0:08:49.400 have been patients who have died of suicide. I have 0:08:49.520 --> 0:08:55.800 not seen patients who because of the DVF they attempted suicide. 0:08:56.120 --> 0:08:59.640 I think that we attribute the suicide, of course as 0:08:59.679 --> 0:09:04.720 the ultimate negative outcome, but as the failure of the treatment, 0:09:05.200 --> 0:09:07.760 of treating the illness that we want to treat. Right 0:09:08.000 --> 0:09:10.920 as if you were having a clinical trial that treats 0:09:11.000 --> 0:09:15.160 advanced cancer, if patients die of that cancer, you don't 0:09:15.160 --> 0:09:16.800 say that it's because of the treatment. 0:09:17.520 --> 0:09:20.080 All these things were explained to Brandy when she first 0:09:20.080 --> 0:09:23.640 contacted Patricio and the other researchers back in twenty eleven, 0:09:24.440 --> 0:09:27.160 and none of it scared her off. In fact, almost 0:09:27.160 --> 0:09:27.959 the opposite. 0:09:28.600 --> 0:09:32.480 It sounds terrible, but I felt like the people who 0:09:33.000 --> 0:09:36.480 thought that I wasn't trying hard enough to get well 0:09:37.679 --> 0:09:40.760 would change their mind if they knew that I had 0:09:40.840 --> 0:09:43.800 had brain surgery trying to get well. 0:09:44.960 --> 0:09:48.800 Not everyone was convinced. To some of her family members, 0:09:49.080 --> 0:09:52.960 DBS didn't sound like medicine. It sounded like a shortcut, 0:09:53.240 --> 0:09:56.400 just turning her emotions over to the control of a computer. 0:09:57.520 --> 0:09:58.360 After a few. 0:09:58.160 --> 0:10:02.040 Appointments to determine whether she was a good candidate, Brandy 0:10:02.120 --> 0:10:05.800 was accepted to the clinical trial for DBS. She moved 0:10:05.800 --> 0:10:08.240 to Atlanta, where she'd need to live for at least 0:10:08.280 --> 0:10:08.680 a year. 0:10:10.600 --> 0:10:15.640 The surgery itself was exhausting. It was very long. So 0:10:16.360 --> 0:10:19.839 it starts way before dawn, and you go in and 0:10:20.440 --> 0:10:24.520 they give you a nice IV to keep you calm, 0:10:24.840 --> 0:10:29.520 and they start drilling a frame into your skull. 0:10:29.640 --> 0:10:33.120 The frame is temporary. It's just to stabilize the patient's 0:10:33.120 --> 0:10:36.400 head during the operation, because for the first part of 0:10:36.440 --> 0:10:38.960 the surgery Brandy would be wide awake. 0:10:41.440 --> 0:10:44.600 Then you go into the operating room and they bolt 0:10:44.679 --> 0:10:47.720 that frame to the operating table, and this way you 0:10:48.040 --> 0:10:52.880 absolutely cannot move your brain, your head, any part of 0:10:52.920 --> 0:10:54.240 your upper body. 0:10:55.160 --> 0:10:59.360 The operating room was crowded with neurosurgeons and the research team. 0:11:00.000 --> 0:11:03.600 Surgeons started stimulating different points in the target region of 0:11:03.640 --> 0:11:07.480 Brandy's brain, trying to pinpoint where to place her implant. 0:11:08.120 --> 0:11:10.560 Each time, they asked her if she felt anything, and 0:11:10.640 --> 0:11:12.239 at one point she did. 0:11:13.520 --> 0:11:16.800 It felt like gravity decreased a little bit, like I 0:11:16.840 --> 0:11:20.120 did not. My mass was less, you know it was. 0:11:20.880 --> 0:11:24.160 I felt lighter, like more air came into my body. 0:11:25.080 --> 0:11:28.840 The surgeons put Brandy under anesthesia, placed the implant in 0:11:28.880 --> 0:11:32.760 that spot, and sewed her back up. The surgeons gave 0:11:32.800 --> 0:11:35.480 Brandy's body a few weeks to heal before turning on 0:11:35.520 --> 0:11:39.000 her device. By chance, that date happened to be the 0:11:39.040 --> 0:11:41.199 eleventh of November twenty eleven. 0:11:45.840 --> 0:11:49.600 I thought eleven eleven eleven was an amazing day to 0:11:49.640 --> 0:11:50.599 become a cyborg. 0:11:51.559 --> 0:11:54.560 Cyborg, of course, is a science fiction term, not a 0:11:54.559 --> 0:11:57.960 medical one, but she likes the way it sounds. When 0:11:58.000 --> 0:12:01.600 the implant was initially turned on, Brandy didn't notice much 0:12:01.600 --> 0:12:04.800 of a change, but about two months later, she has 0:12:04.880 --> 0:12:07.160 what she calls her first good day. 0:12:07.880 --> 0:12:11.400 I was still very very sick, still very very depressed, 0:12:12.240 --> 0:12:15.680 but I could get out of bed and brush my 0:12:15.760 --> 0:12:21.920 teeth and maybe leave the house, and I didn't hate 0:12:22.000 --> 0:12:22.800 my existence. 0:12:23.760 --> 0:12:28.640 Slowly, Brandy started having more good days. Six months after 0:12:28.679 --> 0:12:33.000 her device was switched on, she felt significantly better. By 0:12:33.080 --> 0:12:35.840 the time she'd had it on for eleven months, she 0:12:35.960 --> 0:12:39.480 no longer met the diagnostic criteria for clinical depression. 0:12:40.600 --> 0:12:45.520 I did my best to be very mindful about adding 0:12:45.640 --> 0:12:50.040 one thing back at a time, you know, getting a relationship. 0:12:50.440 --> 0:12:53.480 I met my partner then, and I started to be 0:12:53.600 --> 0:12:59.440 able to support myself and go on trips with friends 0:12:59.679 --> 0:13:01.760 and build a life again. 0:13:03.000 --> 0:13:07.320 Brandy's surgery was twelve years ago now, and she's still thriving. 0:13:07.920 --> 0:13:08.640 In that time. 0:13:09.240 --> 0:13:13.600 She's only felt depressed once out of nowhere. About two 0:13:13.679 --> 0:13:17.720 years after the surgery, she'd started feeling weepy and exhausted, 0:13:18.080 --> 0:13:21.400 so she went to see her research team. They discovered 0:13:21.400 --> 0:13:25.080 that her device had had a minor electronic glitch and 0:13:25.160 --> 0:13:26.600 it had turned itself off. 0:13:29.720 --> 0:13:33.600 And then realizing that was why was when the light switched. 0:13:33.960 --> 0:13:38.760 You know, that was when I realized that this absolutely 0:13:39.400 --> 0:13:44.760 was what was responsible from my recovery. Was this implant, 0:13:45.640 --> 0:13:48.960 This entire bonus life that I have, this sort of 0:13:49.080 --> 0:13:52.720 extra life from a video game that I got from 0:13:53.000 --> 0:13:56.120 this device is the only reason that I am still 0:13:56.120 --> 0:14:01.800 alive today. 0:14:02.640 --> 0:14:05.839 After hearing Brandy's story, I wanted to know more about 0:14:05.840 --> 0:14:10.760 the ethical issues surrounding DBS, like how valid are the 0:14:10.800 --> 0:14:14.640 concerns that DBS outsources too much of a person's self 0:14:14.760 --> 0:14:18.640 to a computer. So I talked to someone who's thinking 0:14:18.679 --> 0:14:22.440 critically about the current and future applications of this technology 0:14:22.880 --> 0:14:27.000 and the thawny ethical questions that surround it. That's after 0:14:27.040 --> 0:14:41.680 the break. Karen Ramelfhanger is a neuroscientist and ethics scholar. 0:14:42.240 --> 0:14:46.320 She's the founding director of the Institute of Neuroethics. She 0:14:46.480 --> 0:14:50.720 explores the potential trajectories of new technologies like DBS and 0:14:50.800 --> 0:14:55.280 the various ethical, medical, and legal ramifications. 0:14:55.120 --> 0:14:59.160 On a day to day basis. I'm exploring the ethical, legal, 0:14:59.200 --> 0:15:03.000 and social pations of new neuroscience. So I am thinking 0:15:03.040 --> 0:15:07.280 about and trying to systematically address questions about how neuroscience 0:15:07.360 --> 0:15:11.320 might challenge our notions of identity, the kinds of world 0:15:11.600 --> 0:15:14.680 we want to live in our day to day life 0:15:15.160 --> 0:15:15.800 as we know it. 0:15:16.560 --> 0:15:19.680 Karen also happens to know Brandy Ellis, who we heard 0:15:19.720 --> 0:15:22.920 from earlier. They both get a lot of invites to 0:15:22.960 --> 0:15:27.560 speak to medical students and bioethicists about DBS and sometimes 0:15:27.680 --> 0:15:30.680 end up on the same panel. I call Karen to 0:15:30.680 --> 0:15:33.840 get a better understanding of where the technology is today, 0:15:34.120 --> 0:15:36.960 where it's going, and what the ethical concerns are. 0:15:38.040 --> 0:15:43.240 While there are remarkable clinical effects tied to deep brain stimulation, 0:15:43.840 --> 0:15:48.360 there were some puzzling ethical tensions that came up around 0:15:48.640 --> 0:15:52.480 deep brain stimulation, and that was for Parkinson's patients. There 0:15:52.560 --> 0:15:55.040 were a small number and still are a small number 0:15:55.080 --> 0:16:01.000 of patients who experienced really identity kind of changing or 0:16:01.120 --> 0:16:05.240 perceived changes in personality and behaviors that they tied to 0:16:05.280 --> 0:16:10.280 the technology. So there were questions about who was actually 0:16:10.440 --> 0:16:12.400 the narrator of the life at that point. Was it 0:16:12.400 --> 0:16:14.640 the technology or was it the person? Was it some 0:16:14.760 --> 0:16:18.960 kind of combination And the goal of the intervention at 0:16:18.960 --> 0:16:23.560 that time was to alleviate movement problems, and now we 0:16:23.600 --> 0:16:28.000 also are exploring brain technologies for intractable depression mood disorders 0:16:28.040 --> 0:16:30.840 that can't be treated by anything else. In this case, 0:16:31.640 --> 0:16:35.440 some of those fundamental features of one might argue those 0:16:35.480 --> 0:16:37.960 or personality features or ways that someone had learned to 0:16:37.960 --> 0:16:41.240 interact with the world for a long time with terrible 0:16:41.600 --> 0:16:44.960 suffering with depression, that maybe now we're actually using the 0:16:44.960 --> 0:16:47.720 deep brain stimulation to change those fundamental features of that 0:16:47.760 --> 0:16:50.160 person's life. So it's not a side effect, It's actually 0:16:50.600 --> 0:16:54.160 part of the treatment. So how do you manage some 0:16:54.280 --> 0:16:58.000 of the tensions in that space around ensuring that the 0:16:58.000 --> 0:16:59.880 person who is getting the treatment is in the t 0:17:00.040 --> 0:17:02.440 I ever see that they are aware of the types 0:17:02.480 --> 0:17:06.840 of experiences they might have in their relationship with that 0:17:06.920 --> 0:17:08.600 technology might change over time. 0:17:09.119 --> 0:17:12.440 So would you say that deep brain stimulation could change 0:17:12.440 --> 0:17:13.000 who we are? 0:17:15.440 --> 0:17:21.240 It's a question that I explore. So I believe that 0:17:21.760 --> 0:17:25.880 all technologies that we create are really a social mirror 0:17:26.080 --> 0:17:29.520 for our fears or aspirations for the kind of world 0:17:29.560 --> 0:17:32.679 we want to live in. So in that way, you 0:17:32.760 --> 0:17:36.639 might ask if these kinds of technologies are tools for 0:17:36.800 --> 0:17:41.800 us to better become ourselves, are they collaborators for becoming ourselves? 0:17:41.880 --> 0:17:44.800 Or in some cases, are some of these tools identities 0:17:44.800 --> 0:17:47.320 in their own right? So these are the types of 0:17:47.400 --> 0:17:49.040 questions I'm exploring. 0:17:49.240 --> 0:17:53.280 And you're involved in the essical and legal approaches to 0:17:53.320 --> 0:17:57.200 these technologies. So who gets to decide, like, even if 0:17:57.240 --> 0:18:01.120 it matters whether they change who we are, who gets 0:18:01.119 --> 0:18:01.639 to say in that? 0:18:02.920 --> 0:18:06.600 Thus far, the conversation hasn't really involved a lot of 0:18:06.600 --> 0:18:11.120 the lived experience the people who are actually using these technologies, 0:18:11.200 --> 0:18:13.480 or might use them in the future, and in a way, 0:18:14.400 --> 0:18:17.119 we are all patients in waiting who may one day 0:18:17.200 --> 0:18:21.399 need these technologies for a variety of reasons. So a 0:18:21.400 --> 0:18:25.160 lot of these ethics conversations, and rightly so, they might 0:18:25.240 --> 0:18:30.800 emerge from scholars in the university. They're people who have 0:18:31.359 --> 0:18:34.640 close interactions with the research and the evolutions of it, 0:18:35.240 --> 0:18:40.040 and we start to see clinical researchers in those conversations 0:18:40.080 --> 0:18:42.120 as well, and then you start to see them kind 0:18:42.119 --> 0:18:45.639 of enter into the policy maker space. But there hasn't 0:18:45.640 --> 0:18:48.000 been a lot of room for people like Brandy Ellis, 0:18:48.200 --> 0:18:51.520 and that's a problem, and we don't have a good 0:18:51.520 --> 0:18:54.320 systematic approach for that, and so I think it's important 0:18:54.359 --> 0:18:58.359 to have formal platforms to give patients and those who 0:18:58.440 --> 0:19:01.640 have lived experience with the devices a voice. But right 0:19:01.680 --> 0:19:06.040 now it's largely dictated by the people doing the research 0:19:06.080 --> 0:19:07.520 and the people who fund that research. 0:19:10.119 --> 0:19:12.960 Could you talk a bit about health equity and who 0:19:13.040 --> 0:19:15.280 so far gets access to these treatments. 0:19:15.760 --> 0:19:22.000 Deep brain stimulation requires a lot of expertise and specialized materials. 0:19:22.280 --> 0:19:25.800 You're not seeing this readily available and accessible most places, 0:19:25.840 --> 0:19:28.359 though in the US I wouldn't say it's easy to 0:19:28.400 --> 0:19:29.800 get it. I mean, I think you'd need to go 0:19:29.840 --> 0:19:33.159 to a specialty center to get it, for example, and 0:19:33.200 --> 0:19:36.480 then you might not have places like low and middle 0:19:36.520 --> 0:19:39.400 income countries who have access to expertise or materials. 0:19:39.720 --> 0:19:43.480 And so what does consent mean in this context with 0:19:43.560 --> 0:19:45.439 this kind of technology. 0:19:46.200 --> 0:19:50.400 That's a good question, and it's something that ethicists think 0:19:50.440 --> 0:19:55.200 a lot about, especially with brain disorders and where cognitive 0:19:55.240 --> 0:20:03.679 capacity might be different due to disease or ability. So 0:20:03.720 --> 0:20:06.879 it's important for us to note that consent is but 0:20:07.040 --> 0:20:14.919 one instrument of ensuring a patient's dignity, their agency in 0:20:15.000 --> 0:20:20.199 their care, and their right to health. So consent is 0:20:20.240 --> 0:20:25.280 not a perfect tool, and we should recognize that consent 0:20:25.359 --> 0:20:28.560 is also not a moment. It's an ongoing exercise where 0:20:28.640 --> 0:20:30.480 you don't just it shouldn't end when you sign a 0:20:30.480 --> 0:20:33.080 piece of paper. There should be an ongoing dialogue between 0:20:33.119 --> 0:20:38.000 the researcher and the participant in the study. I've actually 0:20:38.280 --> 0:20:41.240 listened to other patients talk about the way that they 0:20:41.280 --> 0:20:45.359 were evaluating the kind of risk was just, you know, 0:20:45.400 --> 0:20:48.680 I've already feel like I've got nothing left to live 0:20:48.720 --> 0:20:51.359 for and if this can actually help me want to 0:20:51.359 --> 0:20:54.880 live again, then maybe, but maybe I don't even care 0:20:55.320 --> 0:21:00.439 at that point. So the task is to not have 0:21:00.560 --> 0:21:03.480 the patient decide on their own. So they should also 0:21:03.520 --> 0:21:06.040 have a family member involved who can help them deliberate. 0:21:06.080 --> 0:21:08.840 So there should be someone else present to help. In 0:21:08.920 --> 0:21:12.520 the case of some of these studies, family member is 0:21:12.560 --> 0:21:15.359 required to also sign onto the study and be involved, 0:21:15.560 --> 0:21:18.959 because you need it's very involved for these participants. They 0:21:19.000 --> 0:21:21.480 have to come back from many visits, it's time consuming. 0:21:23.440 --> 0:21:26.520 They need another perspective to also track day to day 0:21:27.440 --> 0:21:28.800 how that patient is progressing. 0:21:29.520 --> 0:21:33.680 And I'm curious. So we're talking about consent of the procedure, 0:21:33.720 --> 0:21:35.960 but what about consent when it comes to turning an 0:21:36.000 --> 0:21:36.840 implant off. 0:21:37.720 --> 0:21:42.200 Yeah, there was a case where an individual had a 0:21:42.240 --> 0:21:46.400 deep brain stimulator put in for a Parkinson's disease, and 0:21:46.640 --> 0:21:49.719 they were one of the few cases that developed adverse 0:21:49.760 --> 0:21:54.840 effects of mania, and they ended up while the stimulator 0:21:54.880 --> 0:22:02.720 was on gambling, ruining their marriage. And the clinical team 0:22:02.760 --> 0:22:06.600 had to decide, you know, should this person The person 0:22:06.640 --> 0:22:09.000 has two choices, this patient, this patient can keep the 0:22:09.160 --> 0:22:14.600 stimulator on. Their motor symptoms are fairly resolved, but they're 0:22:15.560 --> 0:22:17.760 living in such a way that basically they should be 0:22:17.840 --> 0:22:25.359 institutionalized because of their reckless behavior and related to the mania. 0:22:26.440 --> 0:22:28.679 But if they had the device turned off, then the 0:22:28.760 --> 0:22:33.159 patient would be confined to a bed because they wouldn't 0:22:33.200 --> 0:22:36.880 be able to move around. So what should we do here? 0:22:37.520 --> 0:22:39.679 But the first step was the team needed to decide 0:22:39.760 --> 0:22:42.480 were they going to ask the patient if he wanted 0:22:42.480 --> 0:22:45.600 the stimulator on or off when he was on or 0:22:45.640 --> 0:22:50.520 when he was off. So it was a very tricky 0:22:50.840 --> 0:22:55.040 situation and they ended up asking the patient while he 0:22:55.200 --> 0:22:58.840 was off, thinking that this was his more authentic state 0:22:59.080 --> 0:23:02.000 of who he was. And when they asked the patient 0:23:02.040 --> 0:23:04.199 what he wanted to do with a stimulator off, he 0:23:04.240 --> 0:23:07.480 said he'd rather have it on, so he wanted it 0:23:07.600 --> 0:23:07.919 left on. 0:23:08.480 --> 0:23:11.760 And how common is it that deep brain stimulation has 0:23:11.840 --> 0:23:14.920 led to the negative consequences of people's behavior. 0:23:15.960 --> 0:23:21.399 It's actually not that common. So there are a handful 0:23:21.440 --> 0:23:25.119 of cases that have been documented that ethicis and scholars 0:23:25.160 --> 0:23:28.560 have really focused on and written tons of papers. In fact, 0:23:28.560 --> 0:23:31.680 new ethicists cut their teeth on this type of case study, 0:23:32.400 --> 0:23:36.399 but in reality, there's not that many cases. But still 0:23:37.080 --> 0:23:40.240 it's worth paying attention to because that's still one person's 0:23:40.240 --> 0:23:42.200 life who's dramatically changed in a way. They didn't want 0:23:42.200 --> 0:23:43.920 and you don't want that to happen again. 0:23:44.280 --> 0:23:49.359 Yeah, for sure. So I'm just curious with these devices, 0:23:49.680 --> 0:23:52.440 when would you say that they cross over from being 0:23:52.520 --> 0:23:55.639 therapeutic to actually providing some kind of enhancement. 0:23:56.200 --> 0:23:59.920 The therapy enhancement line has always been a blurry on. 0:24:00.760 --> 0:24:04.600 This really does tie to the kind of a knee 0:24:04.680 --> 0:24:08.720 jerk reaction of the notion of who has the right 0:24:09.040 --> 0:24:13.200 to change the human condition and society? Who is the 0:24:13.280 --> 0:24:16.720 right to play God? This is the name of the series. 0:24:17.320 --> 0:24:20.760 Sometimes it's not the playing god part that people are 0:24:20.760 --> 0:24:25.600 worried about, it's the playing part. So are you creating 0:24:25.680 --> 0:24:29.320 new circumstances that are irresponsible? Are you allowing humans to 0:24:29.359 --> 0:24:32.359 go beyond their swim lanes then they shouldn't. Are you 0:24:34.200 --> 0:24:41.000 overriding what is given? But we also know that many 0:24:41.040 --> 0:24:44.000 people are born with certain disabilities, and in those cases 0:24:44.000 --> 0:24:46.399 we don't say it's playing God, typically to try to 0:24:46.480 --> 0:24:50.360 cure them. So in that case, it's not just playing God, 0:24:50.359 --> 0:24:52.119 But how do we play God in the right way? 0:24:52.520 --> 0:24:55.080 Well, thank you so much, Karen. This has been really 0:24:55.720 --> 0:24:59.159 really fascinating to hear all about the important way that 0:24:59.200 --> 0:25:04.120 you're doing today. Brandy Ellis is grateful that she went 0:25:04.200 --> 0:25:07.520 through with the DBS implant. Now that she's back to 0:25:07.560 --> 0:25:11.439 feeling like herself, she seeks out opportunities to speak with 0:25:11.520 --> 0:25:15.359 physicians and researchers to help them understand what that dark 0:25:15.440 --> 0:25:18.560 period of depression and suicidal thinking was like for her. 0:25:19.680 --> 0:25:23.000 She feels that implant essentially saved her life and wants 0:25:23.000 --> 0:25:25.160 be able to know about how much it helped her. 0:25:26.680 --> 0:25:31.920 I want to make it clear that the DBS didn't 0:25:32.760 --> 0:25:35.840 change me. I am not a different person because of 0:25:35.840 --> 0:25:43.280 this implant. Depression changed me. Those years of suffering the 0:25:43.359 --> 0:25:47.760 depression altered my personality, every aspect of my life. The 0:25:47.840 --> 0:25:51.920 DBS did not change me. It restored me. 0:25:57.240 --> 0:26:01.560 Next time on playing God dging category of drugs can 0:26:01.640 --> 0:26:08.200 cure debilitating and even fatal diseases, diseases that were previously untreatable. 0:26:09.040 --> 0:26:13.000 But often these so called miracle drugs can cost a fortune, 0:26:13.640 --> 0:26:16.480 as one mother learned when her child was diagnosed with 0:26:16.560 --> 0:26:17.600