1 00:00:00,160 --> 00:00:03,440 Speaker 1: A quick note before we start the show. This episode 2 00:00:03,480 --> 00:00:07,920 Speaker 1: is about depression and treatment for depression. It contains references 3 00:00:07,920 --> 00:00:11,640 Speaker 1: to suicide. If you or someone you know is struggling 4 00:00:11,680 --> 00:00:14,360 Speaker 1: with thoughts of suicide, we have links to hotlines and 5 00:00:14,400 --> 00:00:15,920 Speaker 1: resources in our show notes. 6 00:00:17,600 --> 00:00:23,239 Speaker 2: I am completely dependent upon electricity as medicine and there 7 00:00:23,280 --> 00:00:26,000 Speaker 2: will never be a point in my life where I 8 00:00:26,040 --> 00:00:30,440 Speaker 2: can quote go off the grid because I can never 9 00:00:30,640 --> 00:00:34,360 Speaker 2: be without electricity for my own survival. 10 00:00:35,680 --> 00:00:39,800 Speaker 1: Brandy Ellis calls herself a cyborg. She has an electrical 11 00:00:39,840 --> 00:00:43,360 Speaker 1: implant in her brain twelve years ago. Before she got 12 00:00:43,360 --> 00:00:47,120 Speaker 1: the implant, she often struggled with depression. She says it 13 00:00:47,159 --> 00:00:51,280 Speaker 1: has made her feel more like herself. Brandy was first 14 00:00:51,280 --> 00:00:55,160 Speaker 1: diagnosed with depression when she was twenty. At that time, 15 00:00:55,320 --> 00:00:58,440 Speaker 1: she slept twenty hours a day and she cried often 16 00:00:58,520 --> 00:01:02,560 Speaker 1: when she was awake for no reason. So she saw 17 00:01:02,600 --> 00:01:05,720 Speaker 1: a therapist and went on medication, and she felt better 18 00:01:06,080 --> 00:01:09,720 Speaker 1: like herself again. She consulted with her doctor and decided 19 00:01:09,760 --> 00:01:13,400 Speaker 1: to stop taking medication, but a few years later her 20 00:01:13,440 --> 00:01:17,319 Speaker 1: symptoms came back. Starting back up with medication and therapy 21 00:01:17,440 --> 00:01:21,039 Speaker 1: pulled her out of it. The depression lifted. This cycle 22 00:01:21,120 --> 00:01:23,679 Speaker 1: went on for over a decade, but when she was 23 00:01:23,720 --> 00:01:27,600 Speaker 1: thirty two, the depression came back, and this time it 24 00:01:27,640 --> 00:01:28,320 Speaker 1: felt different. 25 00:01:30,080 --> 00:01:34,880 Speaker 2: I wasn't sleepy, I was anxious, and I had insomnia, 26 00:01:35,720 --> 00:01:40,240 Speaker 2: and I was less weepy and more cranky. 27 00:01:41,360 --> 00:01:44,160 Speaker 1: She had assumed her depression would resolve like it had 28 00:01:44,280 --> 00:01:47,319 Speaker 1: every other time, once she found the right combination of 29 00:01:47,360 --> 00:01:51,200 Speaker 1: medication and therapy, but for four years nothing helped. 30 00:01:52,280 --> 00:02:00,440 Speaker 2: I tried over two dozen different medications of every conceivable type, 31 00:02:01,200 --> 00:02:04,040 Speaker 2: and that is not counting all the various dosages of 32 00:02:04,120 --> 00:02:09,160 Speaker 2: those medications and all the various combinations of multiple medications. 33 00:02:09,600 --> 00:02:12,960 Speaker 1: Meanwhile, she couldn't hold a job. She moved back home 34 00:02:13,000 --> 00:02:16,840 Speaker 1: to Dowray Beach, Florida, where her parents supported her financially, 35 00:02:17,840 --> 00:02:21,040 Speaker 1: but not everyone in her life was so supportive. Some 36 00:02:21,120 --> 00:02:24,160 Speaker 1: relatives told her that her depression was her own fault, 37 00:02:24,800 --> 00:02:27,760 Speaker 1: that she was just being lazy. For the first time 38 00:02:27,760 --> 00:02:31,519 Speaker 1: in her life, Brandy had thoughts of suicide. 39 00:02:32,080 --> 00:02:36,920 Speaker 2: He never understood what it meant to be suicidal in 40 00:02:36,960 --> 00:02:40,320 Speaker 2: any of my previous depressive episodes, and I refer to 41 00:02:40,360 --> 00:02:43,120 Speaker 2: it now as my brain tried to kill me and 42 00:02:43,240 --> 00:02:44,959 Speaker 2: I was trying to survive. 43 00:02:45,960 --> 00:02:49,600 Speaker 1: As a last result, Brandy's doctors suggested she tried something 44 00:02:49,639 --> 00:02:54,000 Speaker 1: called electroconvulsive therapy. It's a procedure where small amounts of 45 00:02:54,000 --> 00:02:58,080 Speaker 1: electricity are sent through the brain to relieve mental health symptoms. 46 00:02:58,600 --> 00:03:01,760 Speaker 1: It helped, but the relief only lasted for a couple 47 00:03:01,800 --> 00:03:05,440 Speaker 1: of weeks. Brandy's doctors said that in order to keep 48 00:03:05,480 --> 00:03:08,079 Speaker 1: her symptoms at bay, she'd have to keep coming back 49 00:03:08,120 --> 00:03:11,360 Speaker 1: in for treatment every month indefinitely. 50 00:03:11,480 --> 00:03:16,040 Speaker 2: And that was just something that I could not do forever. 51 00:03:16,600 --> 00:03:20,120 Speaker 2: So it did look like I was going to be 52 00:03:20,280 --> 00:03:24,200 Speaker 2: suffering like this for the rest of my life, and 53 00:03:24,280 --> 00:03:28,799 Speaker 2: I didn't know how long I could survive that kind 54 00:03:28,880 --> 00:03:29,840 Speaker 2: of life. 55 00:03:30,280 --> 00:03:33,680 Speaker 1: Brandy's doctors said there was nothing left to try, but 56 00:03:33,800 --> 00:03:37,240 Speaker 1: she wasn't ready to give up. She scoured the internet 57 00:03:37,320 --> 00:03:41,080 Speaker 1: for other treatment options and did an online mental health 58 00:03:41,080 --> 00:03:44,760 Speaker 1: support group. She read about a clinical trial that seemed promising. 59 00:03:45,560 --> 00:03:49,320 Speaker 1: Researchers at Emory University were studying a type of treatment 60 00:03:49,440 --> 00:03:53,560 Speaker 1: called deep brain stimulation. She said she didn't have high 61 00:03:53,560 --> 00:03:55,800 Speaker 1: hopes that it could help her, but she thought it 62 00:03:55,880 --> 00:03:57,400 Speaker 1: might be worth doing anyway. 63 00:03:58,040 --> 00:03:59,480 Speaker 2: I felt like I was going to do the brain 64 00:03:59,520 --> 00:04:04,440 Speaker 2: surgery and then it would not work, and I would 65 00:04:04,480 --> 00:04:11,160 Speaker 2: still have this terminal depression and I would eventually die 66 00:04:11,520 --> 00:04:14,240 Speaker 2: rather than continue to suffer. But I thought that I 67 00:04:14,320 --> 00:04:18,200 Speaker 2: could be a data point that helped people who came 68 00:04:18,279 --> 00:04:18,760 Speaker 2: after me. 69 00:04:20,800 --> 00:04:23,919 Speaker 1: I'm Lauren and Rora Hutchinson. I'm the director of the 70 00:04:24,000 --> 00:04:28,320 Speaker 1: Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. 71 00:04:29,040 --> 00:04:33,200 Speaker 1: On today's show, we're talking about the revolutionary technology of 72 00:04:33,279 --> 00:04:39,240 Speaker 1: deep brain stimulation or DBS. DBS is a highly effective 73 00:04:39,279 --> 00:04:44,160 Speaker 1: treatment for neurological conditions in the rare instances that patients 74 00:04:44,200 --> 00:04:48,599 Speaker 1: aren't responding to other types of treatment. But computer based 75 00:04:48,640 --> 00:04:52,279 Speaker 1: implants can change more about the brain than the disease 76 00:04:52,320 --> 00:04:56,920 Speaker 1: they're meant to treat, which raises all kinds of ethical dilemmas. 77 00:04:58,760 --> 00:05:01,240 Speaker 1: So when it comes to the possib ability of altering 78 00:05:01,279 --> 00:05:05,960 Speaker 1: our personalities by implanting electronics, where do we draw the line? 79 00:05:07,120 --> 00:05:10,400 Speaker 1: Are we giving computers too much control over who we 80 00:05:10,440 --> 00:05:13,640 Speaker 1: are when we allow them to alter fundamental human traits 81 00:05:13,720 --> 00:05:18,400 Speaker 1: like our emotions? And if it's okay to change our moods, 82 00:05:18,600 --> 00:05:24,920 Speaker 1: what about other things like our intelligence? From Pushkin Industries 83 00:05:24,960 --> 00:05:28,920 Speaker 1: and the Johns Hopkins Berman Institute of Bioethics, this is 84 00:05:28,960 --> 00:05:29,920 Speaker 1: playing god. 85 00:05:36,040 --> 00:05:40,479 Speaker 3: This is a neurosurgical procedure that involves the implementation of 86 00:05:40,680 --> 00:05:46,039 Speaker 3: thin electrodes that are, i say, like the thickness of spaghetti. 87 00:05:47,120 --> 00:05:50,479 Speaker 1: This is Patricio Riva Porse. He was one of the 88 00:05:50,520 --> 00:05:55,000 Speaker 1: researchers conducting the study that Brandy came across. These days, 89 00:05:55,040 --> 00:05:58,320 Speaker 1: he's the director of the Treatment Resistant Depression Clinic at 90 00:05:58,360 --> 00:06:02,320 Speaker 1: Emery's a lot of his time working on deep brain 91 00:06:02,440 --> 00:06:04,880 Speaker 1: stimulation and explaining how it works. 92 00:06:05,680 --> 00:06:09,440 Speaker 3: The electrodes is implanted with a canula that keeps it, 93 00:06:09,560 --> 00:06:11,800 Speaker 3: you know, kind of rigid until the point where you 94 00:06:12,200 --> 00:06:13,000 Speaker 3: hit the target. 95 00:06:13,600 --> 00:06:17,000 Speaker 1: The electrodes, he says, empowered by a device that's similar 96 00:06:17,040 --> 00:06:20,880 Speaker 1: to a pacemaker, which gets inserted under the patient's skin 97 00:06:21,120 --> 00:06:25,279 Speaker 1: near the collar bone. Before researchers brought DBS to people 98 00:06:25,320 --> 00:06:28,680 Speaker 1: with depression, they were already using it for conditions like 99 00:06:28,760 --> 00:06:29,880 Speaker 1: Parkinson's disease. 100 00:06:30,800 --> 00:06:36,000 Speaker 3: This idea came from that application into saying, well, what 101 00:06:36,040 --> 00:06:40,880 Speaker 3: if you can deliver small amounts of electricity to specific 102 00:06:40,920 --> 00:06:46,280 Speaker 3: areas of the brain to stimulate circuits that are related 103 00:06:46,480 --> 00:06:51,720 Speaker 3: to mood and emotions towards the circus that control those 104 00:06:51,760 --> 00:06:56,480 Speaker 3: behaviors and those thoughts. In Parkinson's disease. The usual targets 105 00:06:56,600 --> 00:07:00,240 Speaker 3: that are chosen are the ones that are involved in 106 00:07:00,600 --> 00:07:05,039 Speaker 3: treating the tremor or the rigidity, and in depression, the 107 00:07:05,120 --> 00:07:11,600 Speaker 3: circuits are quite different. Different areas were chosen to stimulate, 108 00:07:12,000 --> 00:07:15,840 Speaker 3: and it seems to be that patients with depression have 109 00:07:16,040 --> 00:07:21,040 Speaker 3: an increase in the activity in that area. And the 110 00:07:21,080 --> 00:07:23,560 Speaker 3: thought was, well, what if you implant an electro there 111 00:07:23,600 --> 00:07:25,840 Speaker 3: and you deliver a lot of electricity there. What you 112 00:07:25,920 --> 00:07:29,400 Speaker 3: do is you put that area in an inhibited mode. 113 00:07:30,040 --> 00:07:31,080 Speaker 3: So he turned it down. 114 00:07:32,360 --> 00:07:35,240 Speaker 1: Patricio says that by the time Brandy came across his 115 00:07:35,320 --> 00:07:39,360 Speaker 1: clinical trial, there was already some published research showing that 116 00:07:39,440 --> 00:07:43,240 Speaker 1: his theory helped promise A small study show that out 117 00:07:43,240 --> 00:07:47,559 Speaker 1: of six initial patients, DBS helped four of them. After 118 00:07:47,600 --> 00:07:50,360 Speaker 1: six months of treatment, they were no longer depressed. 119 00:07:51,360 --> 00:07:55,560 Speaker 3: The satisfying aspect of deep brain stimulation and other implantable 120 00:07:55,960 --> 00:07:59,280 Speaker 3: devices is that when patients get well, they stay well. 121 00:08:00,080 --> 00:08:03,320 Speaker 3: Continuous delivery of small amounts of electricity, you know, as 122 00:08:03,920 --> 00:08:06,800 Speaker 3: as simple as it may seem, it seems to be 123 00:08:07,200 --> 00:08:10,320 Speaker 3: a treatment that is sustained over time. That's I think 124 00:08:10,560 --> 00:08:16,240 Speaker 3: is what is so hopeful about these implantable neuromodulation techniques. 125 00:08:17,120 --> 00:08:20,280 Speaker 1: He says, the procedure comes with risks too, like brain 126 00:08:20,280 --> 00:08:24,200 Speaker 1: hemorrhage or infection. It is brain surgery after all. 127 00:08:25,840 --> 00:08:29,000 Speaker 3: And then you have negative outcomes of what happens if 128 00:08:29,240 --> 00:08:34,160 Speaker 3: treatment doesn't work right. These are patients that are very, 129 00:08:34,280 --> 00:08:39,680 Speaker 3: very ill with depression for years. They have a much 130 00:08:39,720 --> 00:08:46,120 Speaker 3: higher risk of suicide. And unfortunately, across the trials there 131 00:08:46,160 --> 00:08:49,400 Speaker 3: have been patients who have died of suicide. I have 132 00:08:49,520 --> 00:08:55,800 Speaker 3: not seen patients who because of the DVF they attempted suicide. 133 00:08:56,120 --> 00:08:59,640 Speaker 3: I think that we attribute the suicide, of course as 134 00:08:59,679 --> 00:09:04,720 Speaker 3: the ultimate negative outcome, but as the failure of the treatment, 135 00:09:05,200 --> 00:09:07,760 Speaker 3: of treating the illness that we want to treat. Right 136 00:09:08,000 --> 00:09:10,920 Speaker 3: as if you were having a clinical trial that treats 137 00:09:11,000 --> 00:09:15,160 Speaker 3: advanced cancer, if patients die of that cancer, you don't 138 00:09:15,160 --> 00:09:16,800 Speaker 3: say that it's because of the treatment. 139 00:09:17,520 --> 00:09:20,080 Speaker 1: All these things were explained to Brandy when she first 140 00:09:20,080 --> 00:09:23,640 Speaker 1: contacted Patricio and the other researchers back in twenty eleven, 141 00:09:24,440 --> 00:09:27,160 Speaker 1: and none of it scared her off. In fact, almost 142 00:09:27,160 --> 00:09:27,959 Speaker 1: the opposite. 143 00:09:28,600 --> 00:09:32,480 Speaker 2: It sounds terrible, but I felt like the people who 144 00:09:33,000 --> 00:09:36,480 Speaker 2: thought that I wasn't trying hard enough to get well 145 00:09:37,679 --> 00:09:40,760 Speaker 2: would change their mind if they knew that I had 146 00:09:40,840 --> 00:09:43,800 Speaker 2: had brain surgery trying to get well. 147 00:09:44,960 --> 00:09:48,800 Speaker 1: Not everyone was convinced. To some of her family members, 148 00:09:49,080 --> 00:09:52,960 Speaker 1: DBS didn't sound like medicine. It sounded like a shortcut, 149 00:09:53,240 --> 00:09:56,400 Speaker 1: just turning her emotions over to the control of a computer. 150 00:09:57,520 --> 00:09:58,360 Speaker 2: After a few. 151 00:09:58,160 --> 00:10:02,040 Speaker 1: Appointments to determine whether she was a good candidate, Brandy 152 00:10:02,120 --> 00:10:05,800 Speaker 1: was accepted to the clinical trial for DBS. She moved 153 00:10:05,800 --> 00:10:08,240 Speaker 1: to Atlanta, where she'd need to live for at least 154 00:10:08,280 --> 00:10:08,680 Speaker 1: a year. 155 00:10:10,600 --> 00:10:15,640 Speaker 2: The surgery itself was exhausting. It was very long. So 156 00:10:16,360 --> 00:10:19,839 Speaker 2: it starts way before dawn, and you go in and 157 00:10:20,440 --> 00:10:24,520 Speaker 2: they give you a nice IV to keep you calm, 158 00:10:24,840 --> 00:10:29,520 Speaker 2: and they start drilling a frame into your skull. 159 00:10:29,640 --> 00:10:33,120 Speaker 1: The frame is temporary. It's just to stabilize the patient's 160 00:10:33,120 --> 00:10:36,400 Speaker 1: head during the operation, because for the first part of 161 00:10:36,440 --> 00:10:38,960 Speaker 1: the surgery Brandy would be wide awake. 162 00:10:41,440 --> 00:10:44,600 Speaker 2: Then you go into the operating room and they bolt 163 00:10:44,679 --> 00:10:47,720 Speaker 2: that frame to the operating table, and this way you 164 00:10:48,040 --> 00:10:52,880 Speaker 2: absolutely cannot move your brain, your head, any part of 165 00:10:52,920 --> 00:10:54,240 Speaker 2: your upper body. 166 00:10:55,160 --> 00:10:59,360 Speaker 1: The operating room was crowded with neurosurgeons and the research team. 167 00:11:00,000 --> 00:11:03,600 Speaker 1: Surgeons started stimulating different points in the target region of 168 00:11:03,640 --> 00:11:07,480 Speaker 1: Brandy's brain, trying to pinpoint where to place her implant. 169 00:11:08,120 --> 00:11:10,560 Speaker 1: Each time, they asked her if she felt anything, and 170 00:11:10,640 --> 00:11:12,239 Speaker 1: at one point she did. 171 00:11:13,520 --> 00:11:16,800 Speaker 2: It felt like gravity decreased a little bit, like I 172 00:11:16,840 --> 00:11:20,120 Speaker 2: did not. My mass was less, you know it was. 173 00:11:20,880 --> 00:11:24,160 Speaker 2: I felt lighter, like more air came into my body. 174 00:11:25,080 --> 00:11:28,840 Speaker 1: The surgeons put Brandy under anesthesia, placed the implant in 175 00:11:28,880 --> 00:11:32,760 Speaker 1: that spot, and sewed her back up. The surgeons gave 176 00:11:32,800 --> 00:11:35,480 Speaker 1: Brandy's body a few weeks to heal before turning on 177 00:11:35,520 --> 00:11:39,000 Speaker 1: her device. By chance, that date happened to be the 178 00:11:39,040 --> 00:11:41,199 Speaker 1: eleventh of November twenty eleven. 179 00:11:45,840 --> 00:11:49,600 Speaker 2: I thought eleven eleven eleven was an amazing day to 180 00:11:49,640 --> 00:11:50,599 Speaker 2: become a cyborg. 181 00:11:51,559 --> 00:11:54,560 Speaker 1: Cyborg, of course, is a science fiction term, not a 182 00:11:54,559 --> 00:11:57,960 Speaker 1: medical one, but she likes the way it sounds. When 183 00:11:58,000 --> 00:12:01,600 Speaker 1: the implant was initially turned on, Brandy didn't notice much 184 00:12:01,600 --> 00:12:04,800 Speaker 1: of a change, but about two months later, she has 185 00:12:04,880 --> 00:12:07,160 Speaker 1: what she calls her first good day. 186 00:12:07,880 --> 00:12:11,400 Speaker 2: I was still very very sick, still very very depressed, 187 00:12:12,240 --> 00:12:15,680 Speaker 2: but I could get out of bed and brush my 188 00:12:15,760 --> 00:12:21,920 Speaker 2: teeth and maybe leave the house, and I didn't hate 189 00:12:22,000 --> 00:12:22,800 Speaker 2: my existence. 190 00:12:23,760 --> 00:12:28,640 Speaker 1: Slowly, Brandy started having more good days. Six months after 191 00:12:28,679 --> 00:12:33,000 Speaker 1: her device was switched on, she felt significantly better. By 192 00:12:33,080 --> 00:12:35,840 Speaker 1: the time she'd had it on for eleven months, she 193 00:12:35,960 --> 00:12:39,480 Speaker 1: no longer met the diagnostic criteria for clinical depression. 194 00:12:40,600 --> 00:12:45,520 Speaker 2: I did my best to be very mindful about adding 195 00:12:45,640 --> 00:12:50,040 Speaker 2: one thing back at a time, you know, getting a relationship. 196 00:12:50,440 --> 00:12:53,480 Speaker 2: I met my partner then, and I started to be 197 00:12:53,600 --> 00:12:59,440 Speaker 2: able to support myself and go on trips with friends 198 00:12:59,679 --> 00:13:01,760 Speaker 2: and build a life again. 199 00:13:03,000 --> 00:13:07,320 Speaker 1: Brandy's surgery was twelve years ago now, and she's still thriving. 200 00:13:07,920 --> 00:13:08,640 Speaker 2: In that time. 201 00:13:09,240 --> 00:13:13,600 Speaker 1: She's only felt depressed once out of nowhere. About two 202 00:13:13,679 --> 00:13:17,720 Speaker 1: years after the surgery, she'd started feeling weepy and exhausted, 203 00:13:18,080 --> 00:13:21,400 Speaker 1: so she went to see her research team. They discovered 204 00:13:21,400 --> 00:13:25,080 Speaker 1: that her device had had a minor electronic glitch and 205 00:13:25,160 --> 00:13:26,600 Speaker 1: it had turned itself off. 206 00:13:29,720 --> 00:13:33,600 Speaker 2: And then realizing that was why was when the light switched. 207 00:13:33,960 --> 00:13:38,760 Speaker 2: You know, that was when I realized that this absolutely 208 00:13:39,400 --> 00:13:44,760 Speaker 2: was what was responsible from my recovery. Was this implant, 209 00:13:45,640 --> 00:13:48,960 Speaker 2: This entire bonus life that I have, this sort of 210 00:13:49,080 --> 00:13:52,720 Speaker 2: extra life from a video game that I got from 211 00:13:53,000 --> 00:13:56,120 Speaker 2: this device is the only reason that I am still 212 00:13:56,120 --> 00:14:01,800 Speaker 2: alive today. 213 00:14:02,640 --> 00:14:05,839 Speaker 1: After hearing Brandy's story, I wanted to know more about 214 00:14:05,840 --> 00:14:10,760 Speaker 1: the ethical issues surrounding DBS, like how valid are the 215 00:14:10,800 --> 00:14:14,640 Speaker 1: concerns that DBS outsources too much of a person's self 216 00:14:14,760 --> 00:14:18,640 Speaker 1: to a computer. So I talked to someone who's thinking 217 00:14:18,679 --> 00:14:22,440 Speaker 1: critically about the current and future applications of this technology 218 00:14:22,880 --> 00:14:27,000 Speaker 1: and the thawny ethical questions that surround it. That's after 219 00:14:27,040 --> 00:14:41,680 Speaker 1: the break. Karen Ramelfhanger is a neuroscientist and ethics scholar. 220 00:14:42,240 --> 00:14:46,320 Speaker 1: She's the founding director of the Institute of Neuroethics. She 221 00:14:46,480 --> 00:14:50,720 Speaker 1: explores the potential trajectories of new technologies like DBS and 222 00:14:50,800 --> 00:14:55,280 Speaker 1: the various ethical, medical, and legal ramifications. 223 00:14:55,120 --> 00:14:59,160 Speaker 4: On a day to day basis. I'm exploring the ethical, legal, 224 00:14:59,200 --> 00:15:03,000 Speaker 4: and social pations of new neuroscience. So I am thinking 225 00:15:03,040 --> 00:15:07,280 Speaker 4: about and trying to systematically address questions about how neuroscience 226 00:15:07,360 --> 00:15:11,320 Speaker 4: might challenge our notions of identity, the kinds of world 227 00:15:11,600 --> 00:15:14,680 Speaker 4: we want to live in our day to day life 228 00:15:15,160 --> 00:15:15,800 Speaker 4: as we know it. 229 00:15:16,560 --> 00:15:19,680 Speaker 1: Karen also happens to know Brandy Ellis, who we heard 230 00:15:19,720 --> 00:15:22,920 Speaker 1: from earlier. They both get a lot of invites to 231 00:15:22,960 --> 00:15:27,560 Speaker 1: speak to medical students and bioethicists about DBS and sometimes 232 00:15:27,680 --> 00:15:30,680 Speaker 1: end up on the same panel. I call Karen to 233 00:15:30,680 --> 00:15:33,840 Speaker 1: get a better understanding of where the technology is today, 234 00:15:34,120 --> 00:15:36,960 Speaker 1: where it's going, and what the ethical concerns are. 235 00:15:38,040 --> 00:15:43,240 Speaker 4: While there are remarkable clinical effects tied to deep brain stimulation, 236 00:15:43,840 --> 00:15:48,360 Speaker 4: there were some puzzling ethical tensions that came up around 237 00:15:48,640 --> 00:15:52,480 Speaker 4: deep brain stimulation, and that was for Parkinson's patients. There 238 00:15:52,560 --> 00:15:55,040 Speaker 4: were a small number and still are a small number 239 00:15:55,080 --> 00:16:01,000 Speaker 4: of patients who experienced really identity kind of changing or 240 00:16:01,120 --> 00:16:05,240 Speaker 4: perceived changes in personality and behaviors that they tied to 241 00:16:05,280 --> 00:16:10,280 Speaker 4: the technology. So there were questions about who was actually 242 00:16:10,440 --> 00:16:12,400 Speaker 4: the narrator of the life at that point. Was it 243 00:16:12,400 --> 00:16:14,640 Speaker 4: the technology or was it the person? Was it some 244 00:16:14,760 --> 00:16:18,960 Speaker 4: kind of combination And the goal of the intervention at 245 00:16:18,960 --> 00:16:23,560 Speaker 4: that time was to alleviate movement problems, and now we 246 00:16:23,600 --> 00:16:28,000 Speaker 4: also are exploring brain technologies for intractable depression mood disorders 247 00:16:28,040 --> 00:16:30,840 Speaker 4: that can't be treated by anything else. In this case, 248 00:16:31,640 --> 00:16:35,440 Speaker 4: some of those fundamental features of one might argue those 249 00:16:35,480 --> 00:16:37,960 Speaker 4: or personality features or ways that someone had learned to 250 00:16:37,960 --> 00:16:41,240 Speaker 4: interact with the world for a long time with terrible 251 00:16:41,600 --> 00:16:44,960 Speaker 4: suffering with depression, that maybe now we're actually using the 252 00:16:44,960 --> 00:16:47,720 Speaker 4: deep brain stimulation to change those fundamental features of that 253 00:16:47,760 --> 00:16:50,160 Speaker 4: person's life. So it's not a side effect, It's actually 254 00:16:50,600 --> 00:16:54,160 Speaker 4: part of the treatment. So how do you manage some 255 00:16:54,280 --> 00:16:58,000 Speaker 4: of the tensions in that space around ensuring that the 256 00:16:58,000 --> 00:16:59,880 Speaker 4: person who is getting the treatment is in the t 257 00:17:00,040 --> 00:17:02,440 Speaker 4: I ever see that they are aware of the types 258 00:17:02,480 --> 00:17:06,840 Speaker 4: of experiences they might have in their relationship with that 259 00:17:06,920 --> 00:17:08,600 Speaker 4: technology might change over time. 260 00:17:09,119 --> 00:17:12,440 Speaker 1: So would you say that deep brain stimulation could change 261 00:17:12,440 --> 00:17:13,000 Speaker 1: who we are? 262 00:17:15,440 --> 00:17:21,240 Speaker 4: It's a question that I explore. So I believe that 263 00:17:21,760 --> 00:17:25,880 Speaker 4: all technologies that we create are really a social mirror 264 00:17:26,080 --> 00:17:29,520 Speaker 4: for our fears or aspirations for the kind of world 265 00:17:29,560 --> 00:17:32,679 Speaker 4: we want to live in. So in that way, you 266 00:17:32,760 --> 00:17:36,639 Speaker 4: might ask if these kinds of technologies are tools for 267 00:17:36,800 --> 00:17:41,800 Speaker 4: us to better become ourselves, are they collaborators for becoming ourselves? 268 00:17:41,880 --> 00:17:44,800 Speaker 4: Or in some cases, are some of these tools identities 269 00:17:44,800 --> 00:17:47,320 Speaker 4: in their own right? So these are the types of 270 00:17:47,400 --> 00:17:49,040 Speaker 4: questions I'm exploring. 271 00:17:49,240 --> 00:17:53,280 Speaker 1: And you're involved in the essical and legal approaches to 272 00:17:53,320 --> 00:17:57,200 Speaker 1: these technologies. So who gets to decide, like, even if 273 00:17:57,240 --> 00:18:01,120 Speaker 1: it matters whether they change who we are, who gets 274 00:18:01,119 --> 00:18:01,639 Speaker 1: to say in that? 275 00:18:02,920 --> 00:18:06,600 Speaker 4: Thus far, the conversation hasn't really involved a lot of 276 00:18:06,600 --> 00:18:11,120 Speaker 4: the lived experience the people who are actually using these technologies, 277 00:18:11,200 --> 00:18:13,480 Speaker 4: or might use them in the future, and in a way, 278 00:18:14,400 --> 00:18:17,119 Speaker 4: we are all patients in waiting who may one day 279 00:18:17,200 --> 00:18:21,399 Speaker 4: need these technologies for a variety of reasons. So a 280 00:18:21,400 --> 00:18:25,160 Speaker 4: lot of these ethics conversations, and rightly so, they might 281 00:18:25,240 --> 00:18:30,800 Speaker 4: emerge from scholars in the university. They're people who have 282 00:18:31,359 --> 00:18:34,640 Speaker 4: close interactions with the research and the evolutions of it, 283 00:18:35,240 --> 00:18:40,040 Speaker 4: and we start to see clinical researchers in those conversations 284 00:18:40,080 --> 00:18:42,120 Speaker 4: as well, and then you start to see them kind 285 00:18:42,119 --> 00:18:45,639 Speaker 4: of enter into the policy maker space. But there hasn't 286 00:18:45,640 --> 00:18:48,000 Speaker 4: been a lot of room for people like Brandy Ellis, 287 00:18:48,200 --> 00:18:51,520 Speaker 4: and that's a problem, and we don't have a good 288 00:18:51,520 --> 00:18:54,320 Speaker 4: systematic approach for that, and so I think it's important 289 00:18:54,359 --> 00:18:58,359 Speaker 4: to have formal platforms to give patients and those who 290 00:18:58,440 --> 00:19:01,640 Speaker 4: have lived experience with the devices a voice. But right 291 00:19:01,680 --> 00:19:06,040 Speaker 4: now it's largely dictated by the people doing the research 292 00:19:06,080 --> 00:19:07,520 Speaker 4: and the people who fund that research. 293 00:19:10,119 --> 00:19:12,960 Speaker 1: Could you talk a bit about health equity and who 294 00:19:13,040 --> 00:19:15,280 Speaker 1: so far gets access to these treatments. 295 00:19:15,760 --> 00:19:22,000 Speaker 4: Deep brain stimulation requires a lot of expertise and specialized materials. 296 00:19:22,280 --> 00:19:25,800 Speaker 4: You're not seeing this readily available and accessible most places, 297 00:19:25,840 --> 00:19:28,359 Speaker 4: though in the US I wouldn't say it's easy to 298 00:19:28,400 --> 00:19:29,800 Speaker 4: get it. I mean, I think you'd need to go 299 00:19:29,840 --> 00:19:33,159 Speaker 4: to a specialty center to get it, for example, and 300 00:19:33,200 --> 00:19:36,480 Speaker 4: then you might not have places like low and middle 301 00:19:36,520 --> 00:19:39,400 Speaker 4: income countries who have access to expertise or materials. 302 00:19:39,720 --> 00:19:43,480 Speaker 1: And so what does consent mean in this context with 303 00:19:43,560 --> 00:19:45,439 Speaker 1: this kind of technology. 304 00:19:46,200 --> 00:19:50,400 Speaker 4: That's a good question, and it's something that ethicists think 305 00:19:50,440 --> 00:19:55,200 Speaker 4: a lot about, especially with brain disorders and where cognitive 306 00:19:55,240 --> 00:20:03,679 Speaker 4: capacity might be different due to disease or ability. So 307 00:20:03,720 --> 00:20:06,879 Speaker 4: it's important for us to note that consent is but 308 00:20:07,040 --> 00:20:14,919 Speaker 4: one instrument of ensuring a patient's dignity, their agency in 309 00:20:15,000 --> 00:20:20,199 Speaker 4: their care, and their right to health. So consent is 310 00:20:20,240 --> 00:20:25,280 Speaker 4: not a perfect tool, and we should recognize that consent 311 00:20:25,359 --> 00:20:28,560 Speaker 4: is also not a moment. It's an ongoing exercise where 312 00:20:28,640 --> 00:20:30,480 Speaker 4: you don't just it shouldn't end when you sign a 313 00:20:30,480 --> 00:20:33,080 Speaker 4: piece of paper. There should be an ongoing dialogue between 314 00:20:33,119 --> 00:20:38,000 Speaker 4: the researcher and the participant in the study. I've actually 315 00:20:38,280 --> 00:20:41,240 Speaker 4: listened to other patients talk about the way that they 316 00:20:41,280 --> 00:20:45,359 Speaker 4: were evaluating the kind of risk was just, you know, 317 00:20:45,400 --> 00:20:48,680 Speaker 4: I've already feel like I've got nothing left to live 318 00:20:48,720 --> 00:20:51,359 Speaker 4: for and if this can actually help me want to 319 00:20:51,359 --> 00:20:54,880 Speaker 4: live again, then maybe, but maybe I don't even care 320 00:20:55,320 --> 00:21:00,439 Speaker 4: at that point. So the task is to not have 321 00:21:00,560 --> 00:21:03,480 Speaker 4: the patient decide on their own. So they should also 322 00:21:03,520 --> 00:21:06,040 Speaker 4: have a family member involved who can help them deliberate. 323 00:21:06,080 --> 00:21:08,840 Speaker 4: So there should be someone else present to help. In 324 00:21:08,920 --> 00:21:12,520 Speaker 4: the case of some of these studies, family member is 325 00:21:12,560 --> 00:21:15,359 Speaker 4: required to also sign onto the study and be involved, 326 00:21:15,560 --> 00:21:18,959 Speaker 4: because you need it's very involved for these participants. They 327 00:21:19,000 --> 00:21:21,480 Speaker 4: have to come back from many visits, it's time consuming. 328 00:21:23,440 --> 00:21:26,520 Speaker 4: They need another perspective to also track day to day 329 00:21:27,440 --> 00:21:28,800 Speaker 4: how that patient is progressing. 330 00:21:29,520 --> 00:21:33,680 Speaker 1: And I'm curious. So we're talking about consent of the procedure, 331 00:21:33,720 --> 00:21:35,960 Speaker 1: but what about consent when it comes to turning an 332 00:21:36,000 --> 00:21:36,840 Speaker 1: implant off. 333 00:21:37,720 --> 00:21:42,200 Speaker 4: Yeah, there was a case where an individual had a 334 00:21:42,240 --> 00:21:46,400 Speaker 4: deep brain stimulator put in for a Parkinson's disease, and 335 00:21:46,640 --> 00:21:49,719 Speaker 4: they were one of the few cases that developed adverse 336 00:21:49,760 --> 00:21:54,840 Speaker 4: effects of mania, and they ended up while the stimulator 337 00:21:54,880 --> 00:22:02,720 Speaker 4: was on gambling, ruining their marriage. And the clinical team 338 00:22:02,760 --> 00:22:06,600 Speaker 4: had to decide, you know, should this person The person 339 00:22:06,640 --> 00:22:09,000 Speaker 4: has two choices, this patient, this patient can keep the 340 00:22:09,160 --> 00:22:14,600 Speaker 4: stimulator on. Their motor symptoms are fairly resolved, but they're 341 00:22:15,560 --> 00:22:17,760 Speaker 4: living in such a way that basically they should be 342 00:22:17,840 --> 00:22:25,359 Speaker 4: institutionalized because of their reckless behavior and related to the mania. 343 00:22:26,440 --> 00:22:28,679 Speaker 4: But if they had the device turned off, then the 344 00:22:28,760 --> 00:22:33,159 Speaker 4: patient would be confined to a bed because they wouldn't 345 00:22:33,200 --> 00:22:36,880 Speaker 4: be able to move around. So what should we do here? 346 00:22:37,520 --> 00:22:39,679 Speaker 4: But the first step was the team needed to decide 347 00:22:39,760 --> 00:22:42,480 Speaker 4: were they going to ask the patient if he wanted 348 00:22:42,480 --> 00:22:45,600 Speaker 4: the stimulator on or off when he was on or 349 00:22:45,640 --> 00:22:50,520 Speaker 4: when he was off. So it was a very tricky 350 00:22:50,840 --> 00:22:55,040 Speaker 4: situation and they ended up asking the patient while he 351 00:22:55,200 --> 00:22:58,840 Speaker 4: was off, thinking that this was his more authentic state 352 00:22:59,080 --> 00:23:02,000 Speaker 4: of who he was. And when they asked the patient 353 00:23:02,040 --> 00:23:04,199 Speaker 4: what he wanted to do with a stimulator off, he 354 00:23:04,240 --> 00:23:07,480 Speaker 4: said he'd rather have it on, so he wanted it 355 00:23:07,600 --> 00:23:07,919 Speaker 4: left on. 356 00:23:08,480 --> 00:23:11,760 Speaker 1: And how common is it that deep brain stimulation has 357 00:23:11,840 --> 00:23:14,920 Speaker 1: led to the negative consequences of people's behavior. 358 00:23:15,960 --> 00:23:21,399 Speaker 4: It's actually not that common. So there are a handful 359 00:23:21,440 --> 00:23:25,119 Speaker 4: of cases that have been documented that ethicis and scholars 360 00:23:25,160 --> 00:23:28,560 Speaker 4: have really focused on and written tons of papers. In fact, 361 00:23:28,560 --> 00:23:31,680 Speaker 4: new ethicists cut their teeth on this type of case study, 362 00:23:32,400 --> 00:23:36,399 Speaker 4: but in reality, there's not that many cases. But still 363 00:23:37,080 --> 00:23:40,240 Speaker 4: it's worth paying attention to because that's still one person's 364 00:23:40,240 --> 00:23:42,200 Speaker 4: life who's dramatically changed in a way. They didn't want 365 00:23:42,200 --> 00:23:43,920 Speaker 4: and you don't want that to happen again. 366 00:23:44,280 --> 00:23:49,359 Speaker 1: Yeah, for sure. So I'm just curious with these devices, 367 00:23:49,680 --> 00:23:52,440 Speaker 1: when would you say that they cross over from being 368 00:23:52,520 --> 00:23:55,639 Speaker 1: therapeutic to actually providing some kind of enhancement. 369 00:23:56,200 --> 00:23:59,920 Speaker 4: The therapy enhancement line has always been a blurry on. 370 00:24:00,760 --> 00:24:04,600 Speaker 4: This really does tie to the kind of a knee 371 00:24:04,680 --> 00:24:08,720 Speaker 4: jerk reaction of the notion of who has the right 372 00:24:09,040 --> 00:24:13,200 Speaker 4: to change the human condition and society? Who is the 373 00:24:13,280 --> 00:24:16,720 Speaker 4: right to play God? This is the name of the series. 374 00:24:17,320 --> 00:24:20,760 Speaker 4: Sometimes it's not the playing god part that people are 375 00:24:20,760 --> 00:24:25,600 Speaker 4: worried about, it's the playing part. So are you creating 376 00:24:25,680 --> 00:24:29,320 Speaker 4: new circumstances that are irresponsible? Are you allowing humans to 377 00:24:29,359 --> 00:24:32,359 Speaker 4: go beyond their swim lanes then they shouldn't. Are you 378 00:24:34,200 --> 00:24:41,000 Speaker 4: overriding what is given? But we also know that many 379 00:24:41,040 --> 00:24:44,000 Speaker 4: people are born with certain disabilities, and in those cases 380 00:24:44,000 --> 00:24:46,399 Speaker 4: we don't say it's playing God, typically to try to 381 00:24:46,480 --> 00:24:50,360 Speaker 4: cure them. So in that case, it's not just playing God, 382 00:24:50,359 --> 00:24:52,119 Speaker 4: But how do we play God in the right way? 383 00:24:52,520 --> 00:24:55,080 Speaker 1: Well, thank you so much, Karen. This has been really 384 00:24:55,720 --> 00:24:59,159 Speaker 1: really fascinating to hear all about the important way that 385 00:24:59,200 --> 00:25:04,120 Speaker 1: you're doing today. Brandy Ellis is grateful that she went 386 00:25:04,200 --> 00:25:07,520 Speaker 1: through with the DBS implant. Now that she's back to 387 00:25:07,560 --> 00:25:11,439 Speaker 1: feeling like herself, she seeks out opportunities to speak with 388 00:25:11,520 --> 00:25:15,359 Speaker 1: physicians and researchers to help them understand what that dark 389 00:25:15,440 --> 00:25:18,560 Speaker 1: period of depression and suicidal thinking was like for her. 390 00:25:19,680 --> 00:25:23,000 Speaker 1: She feels that implant essentially saved her life and wants 391 00:25:23,000 --> 00:25:25,160 Speaker 1: be able to know about how much it helped her. 392 00:25:26,680 --> 00:25:31,920 Speaker 2: I want to make it clear that the DBS didn't 393 00:25:32,760 --> 00:25:35,840 Speaker 2: change me. I am not a different person because of 394 00:25:35,840 --> 00:25:43,280 Speaker 2: this implant. Depression changed me. Those years of suffering the 395 00:25:43,359 --> 00:25:47,760 Speaker 2: depression altered my personality, every aspect of my life. The 396 00:25:47,840 --> 00:25:51,920 Speaker 2: DBS did not change me. It restored me. 397 00:25:57,240 --> 00:26:01,560 Speaker 1: Next time on playing God dging category of drugs can 398 00:26:01,640 --> 00:26:08,200 Speaker 1: cure debilitating and even fatal diseases, diseases that were previously untreatable. 399 00:26:09,040 --> 00:26:13,000 Speaker 1: But often these so called miracle drugs can cost a fortune, 400 00:26:13,640 --> 00:26:16,480 Speaker 1: as one mother learned when her child was diagnosed with 401 00:26:16,560 --> 00:26:17,600 Speaker 1: a fatal disease. 402 00:26:19,440 --> 00:26:21,480 Speaker 2: We were talking about him living. 403 00:26:21,920 --> 00:26:26,200 Speaker 4: I mean, you'll pay anything, Like I would say that quickly, like. 404 00:26:26,240 --> 00:26:27,720 Speaker 2: Absolutely, I would pay anything. 405 00:26:27,880 --> 00:26:30,280 Speaker 4: But then how can I pay anything? Like? 406 00:26:31,480 --> 00:26:34,320 Speaker 1: How do I pay one hundred and twenty five thousand. 407 00:26:34,040 --> 00:26:37,800 Speaker 2: Dollars a dose. Just get that out three times a year. 408 00:26:38,040 --> 00:26:39,000 Speaker 2: That's impossible. 409 00:26:40,320 --> 00:26:44,919 Speaker 1: Join us next week for more Playing God. Thank you 410 00:26:44,960 --> 00:26:49,760 Speaker 1: to our guests Brandy Ellis, Karen Rommelfanger, and Patricio rev 411 00:26:49,960 --> 00:26:54,320 Speaker 1: paulse Playing God is a co production of Pushkin Industries 412 00:26:54,440 --> 00:26:59,520 Speaker 1: and the Johns Hopkins Berman Institute of Bioethics. Emily Bourne 413 00:26:59,600 --> 00:27:03,719 Speaker 1: is our producer. This episode was also produced by Sophie 414 00:27:03,760 --> 00:27:07,919 Speaker 1: Crane and Lucy Sullivan. Our editors are Karen Chakerjee and 415 00:27:08,040 --> 00:27:13,200 Speaker 1: Kate Parkinson Morgan. Mixing by Samir Sengupta, Theme music by 416 00:27:13,200 --> 00:27:18,480 Speaker 1: Echo Mountain, Engineering support from Sarah Bruguer and Amanda Kaiwang. 417 00:27:19,520 --> 00:27:23,840 Speaker 1: Show art by Sean Krney, fact checking by David jar 418 00:27:24,200 --> 00:27:29,360 Speaker 1: and Arthur Gompertz. Our executive producer is Justine Lang at 419 00:27:29,400 --> 00:27:33,399 Speaker 1: the Johns Hopkins Berman Institute of Bioethics. Our executive producers 420 00:27:33,480 --> 00:27:37,440 Speaker 1: are Jeffrey Kahan and Anna Mastriani, working with a Melia Hood. 421 00:27:37,960 --> 00:27:42,720 Speaker 1: Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. 422 00:27:42,880 --> 00:27:52,320 Speaker 1: Come back next week for more Playing God. If you 423 00:27:52,400 --> 00:27:55,119 Speaker 1: have enjoyed hearing about these stories and want to know 424 00:27:55,240 --> 00:27:58,720 Speaker 1: more about the history of bioethics. We have been creating 425 00:27:58,760 --> 00:28:01,840 Speaker 1: something very special for you. We have an oral history 426 00:28:01,880 --> 00:28:05,600 Speaker 1: collection with the founding figures of modern bioethics in America. 427 00:28:06,280 --> 00:28:09,680 Speaker 1: The collection is called Moral Histories, and in it you'll 428 00:28:09,720 --> 00:28:12,239 Speaker 1: hear from people who are in the room as some 429 00:28:12,280 --> 00:28:15,199 Speaker 1: of the most significant decisions were made about how to 430 00:28:15,280 --> 00:28:19,240 Speaker 1: manage new technological developments in science and medicine. Go to 431 00:28:19,320 --> 00:28:23,840 Speaker 1: Bioethics dot Jhu dot edu forward slash Moral Histories to 432 00:28:23,920 --> 00:28:24,480 Speaker 1: learn more.