November 21, 2023 • 28 mins
For years Brandy Ellis had tried everything to treat depression but nothing worked. Then one day she heard about something called deep brain stimulation, a brain implant that treats some neurological conditions. This technological intervention–that changed her life–also raises ethics questions. Because brain implants have the potential to change our personalities and our performance– where do we draw the line? Are we giving such devices too much control over who we are by using them to alter fundamental human traits like our emotions?
Note: This episode contains references to suicide. If you or someone you know is struggling with thoughts of suicide, there are resources that can help you. In the US, dial 988 to reach the Suicide & Crisis lifeline for free 24/7 confidential support from a trained listener. Or text SAVE to 741741 to reach a trained helper at the Crisis Text Line.
Show Notes:
In addition to Brandy Ellis, this episode features interviews with:
Patricio Riva Posse, Associate Professor, Psychiatry and Behavioral Sciences, Emory University School of Medicine
Karen Rommelfanger, Founding Director, Institute of Neuroethics; CEO, Ningen Neuroethics Co-Lab; Senior Faculty Fellow, Emory University Center for Ethics (previously director of the Neuroethics Program); Adjunct Associate Professor, Departments of Neurology, Psychiatry & Behavioral Sciences, Emory University School of Medicine.
You can learn more about deep brain stimulation (DBS) here.
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
A quick note before we start the show. This episode
is about depression and treatment for depression. It contains references
to suicide. If you or someone you know is struggling
with thoughts of suicide, we have links to hotlines and
resources in our show notes.
Speaker 2 (00:17):
I am completely dependent upon electricity as medicine and there
will never be a point in my life where I
can quote go off the grid because I can never
be without electricity for my own survival.
Speaker 1 (00:35):
Brandy Ellis calls herself a cyborg. She has an electrical
implant in her brain twelve years ago. Before she got
the implant, she often struggled with depression. She says it
has made her feel more like herself. Brandy was first
diagnosed with depression when she was twenty. At that time,
she slept twenty hours a day and she cried often
(00:58):
when she was awake for no reason. So she saw
a therapist and went on medication, and she felt better
like herself again. She consulted with her doctor and decided
to stop taking medication, but a few years later her
symptoms came back. Starting back up with medication and therapy
pulled her out of it. The depression lifted. This cycle
(01:21):
went on for over a decade, but when she was
thirty two, the depression came back, and this time it
felt different.
Speaker 2 (01:30):
I wasn't sleepy, I was anxious, and I had insomnia,
and I was less weepy and more cranky.
Speaker 1 (01:41):
She had assumed her depression would resolve like it had
every other time, once she found the right combination of
medication and therapy, but for four years nothing helped.
Speaker 2 (01:52):
I tried over two dozen different medications of every conceivable type,
and that is not counting all the various dosages of
those medications and all the various combinations of multiple medications.
Speaker 1 (02:09):
Meanwhile, she couldn't hold a job. She moved back home
to Dowray Beach, Florida, where her parents supported her financially,
but not everyone in her life was so supportive. Some
relatives told her that her depression was her own fault,
that she was just being lazy. For the first time
in her life, Brandy had thoughts of suicide.
Speaker 2 (02:32):
He never understood what it meant to be suicidal in
any of my previous depressive episodes, and I refer to
it now as my brain tried to kill me and
I was trying to survive.
Speaker 1 (02:45):
As a last result, Brandy's doctors suggested she tried something
called electroconvulsive therapy. It's a procedure where small amounts of
electricity are sent through the brain to relieve mental health symptoms.
It helped, but the relief only lasted for a couple
of weeks. Brandy's doctors said that in order to keep
her symptoms at bay, she'd have to keep coming back
(03:08):
in for treatment every month indefinitely.
Speaker 2 (03:11):
And that was just something that I could not do forever.
So it did look like I was going to be
suffering like this for the rest of my life, and
I didn't know how long I could survive that kind
of life.
Speaker 1 (03:30):
Brandy's doctors said there was nothing left to try, but
she wasn't ready to give up. She scoured the internet
for other treatment options and did an online mental health
support group. She read about a clinical trial that seemed promising.
Researchers at Emory University were studying a type of treatment
called deep brain stimulation. She said she didn't have high
(03:53):
hopes that it could help her, but she thought it
might be worth doing anyway.
Speaker 2 (03:58):
I felt like I was going to do the brain
surgery and then it would not work, and I would
still have this terminal depression and I would eventually die
rather than continue to suffer. But I thought that I
could be a data point that helped people who came
(04:18):
after me.
Speaker 1 (04:20):
I'm Lauren and Rora Hutchinson. I'm the director of the
Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.
On today's show, we're talking about the revolutionary technology of
deep brain stimulation or DBS. DBS is a highly effective
treatment for neurological conditions in the rare instances that patients
(04:44):
aren't responding to other types of treatment. But computer based
implants can change more about the brain than the disease
they're meant to treat, which raises all kinds of ethical dilemmas.
So when it comes to the possib ability of altering
our personalities by implanting electronics, where do we draw the line?
(05:07):
Are we giving computers too much control over who we
are when we allow them to alter fundamental human traits
like our emotions? And if it's okay to change our moods,
what about other things like our intelligence? From Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics, this is
(05:28):
playing god.
Speaker 3 (05:36):
This is a neurosurgical procedure that involves the implementation of
thin electrodes that are, i say, like the thickness of spaghetti.
Speaker 1 (05:47):
This is Patricio Riva Porse. He was one of the
researchers conducting the study that Brandy came across. These days,
he's the director of the Treatment Resistant Depression Clinic at
Emery's a lot of his time working on deep brain
stimulation and explaining how it works.
Speaker 3 (06:05):
The electrodes is implanted with a canula that keeps it,
you know, kind of rigid until the point where you
hit the target.
Speaker 1 (06:13):
The electrodes, he says, empowered by a device that's similar
to a pacemaker, which gets inserted under the patient's skin
near the collar bone. Before researchers brought DBS to people
with depression, they were already using it for conditions like
Parkinson's disease.
Speaker 3 (06:30):
This idea came from that application into saying, well, what
if you can deliver small amounts of electricity to specific
areas of the brain to stimulate circuits that are related
to mood and emotions towards the circus that control those
(06:51):
behaviors and those thoughts. In Parkinson's disease. The usual targets
that are chosen are the ones that are involved in
treating the tremor or the rigidity, and in depression, the
circuits are quite different. Different areas were chosen to stimulate,
(07:12):
and it seems to be that patients with depression have
an increase in the activity in that area. And the
thought was, well, what if you implant an electro there
and you deliver a lot of electricity there. What you
do is you put that area in an inhibited mode.
So he turned it down.
Speaker 1 (07:32):
Patricio says that by the time Brandy came across his
clinical trial, there was already some published research showing that
his theory helped promise A small study show that out
of six initial patients, DBS helped four of them. After
six months of treatment, they were no longer depressed.
Speaker 3 (07:51):
The satisfying aspect of deep brain stimulation and other implantable
devices is that when patients get well, they stay well.
Continuous delivery of small amounts of electricity, you know, as
as simple as it may seem, it seems to be
a treatment that is sustained over time. That's I think
is what is so hopeful about these implantable neuromodulation techniques.
Speaker 1 (08:17):
He says, the procedure comes with risks too, like brain
hemorrhage or infection. It is brain surgery after all.
Speaker 3 (08:25):
And then you have negative outcomes of what happens if
treatment doesn't work right. These are patients that are very,
very ill with depression for years. They have a much
higher risk of suicide. And unfortunately, across the trials there
(08:46):
have been patients who have died of suicide. I have
not seen patients who because of the DVF they attempted suicide.
I think that we attribute the suicide, of course as
the ultimate negative outcome, but as the failure of the treatment,
of treating the illness that we want to treat. Right
(09:08):
as if you were having a clinical trial that treats
advanced cancer, if patients die of that cancer, you don't
say that it's because of the treatment.
Speaker 1 (09:17):
All these things were explained to Brandy when she first
contacted Patricio and the other researchers back in twenty eleven,
and none of it scared her off. In fact, almost
the opposite.
Speaker 2 (09:28):
It sounds terrible, but I felt like the people who
thought that I wasn't trying hard enough to get well
would change their mind if they knew that I had
had brain surgery trying to get well.
Speaker 1 (09:44):
Not everyone was convinced. To some of her family members,
DBS didn't sound like medicine. It sounded like a shortcut,
just turning her emotions over to the control of a computer.
Speaker 2 (09:57):
After a few.
Speaker 1 (09:58):
Appointments to determine whether she was a good candidate, Brandy
was accepted to the clinical trial for DBS. She moved
to Atlanta, where she'd need to live for at least
a year.
Speaker 2 (10:10):
The surgery itself was exhausting. It was very long. So
it starts way before dawn, and you go in and
they give you a nice IV to keep you calm,
and they start drilling a frame into your skull.
Speaker 1 (10:29):
The frame is temporary. It's just to stabilize the patient's
head during the operation, because for the first part of
the surgery Brandy would be wide awake.
Speaker 2 (10:41):
Then you go into the operating room and they bolt
that frame to the operating table, and this way you
absolutely cannot move your brain, your head, any part of
your upper body.
Speaker 1 (10:55):
The operating room was crowded with neurosurgeons and the research team.
Surgeons started stimulating different points in the target region of
Brandy's brain, trying to pinpoint where to place her implant.
Each time, they asked her if she felt anything, and
at one point she did.
Speaker 2 (11:13):
It felt like gravity decreased a little bit, like I
did not. My mass was less, you know it was.
I felt lighter, like more air came into my body.
Speaker 1 (11:25):
The surgeons put Brandy under anesthesia, placed the implant in
that spot, and sewed her back up. The surgeons gave
Brandy's body a few weeks to heal before turning on
her device. By chance, that date happened to be the
eleventh of November twenty eleven.
Speaker 2 (11:45):
I thought eleven eleven eleven was an amazing day to
become a cyborg.
Speaker 1 (11:51):
Cyborg, of course, is a science fiction term, not a
medical one, but she likes the way it sounds. When
the implant was initially turned on, Brandy didn't notice much
of a change, but about two months later, she has
what she calls her first good day.
Speaker 2 (12:07):
I was still very very sick, still very very depressed,
but I could get out of bed and brush my
teeth and maybe leave the house, and I didn't hate
my existence.
Speaker 1 (12:23):
Slowly, Brandy started having more good days. Six months after
her device was switched on, she felt significantly better. By
the time she'd had it on for eleven months, she
no longer met the diagnostic criteria for clinical depression.
Speaker 2 (12:40):
I did my best to be very mindful about adding
one thing back at a time, you know, getting a relationship.
I met my partner then, and I started to be
able to support myself and go on trips with friends
and build a life again.
Speaker 1 (13:03):
Brandy's surgery was twelve years ago now, and she's still thriving.
Speaker 2 (13:07):
In that time.
Speaker 1 (13:09):
She's only felt depressed once out of nowhere. About two
years after the surgery, she'd started feeling weepy and exhausted,
so she went to see her research team. They discovered
that her device had had a minor electronic glitch and
it had turned itself off.
Speaker 2 (13:29):
And then realizing that was why was when the light switched.
You know, that was when I realized that this absolutely
was what was responsible from my recovery. Was this implant,
This entire bonus life that I have, this sort of
extra life from a video game that I got from
(13:53):
this device is the only reason that I am still
alive today.
Speaker 1 (14:02):
After hearing Brandy's story, I wanted to know more about
the ethical issues surrounding DBS, like how valid are the
concerns that DBS outsources too much of a person's self
to a computer. So I talked to someone who's thinking
critically about the current and future applications of this technology
(14:22):
and the thawny ethical questions that surround it. That's after
the break. Karen Ramelfhanger is a neuroscientist and ethics scholar.
She's the founding director of the Institute of Neuroethics. She
(14:46):
explores the potential trajectories of new technologies like DBS and
the various ethical, medical, and legal ramifications.
Speaker 4 (14:55):
On a day to day basis. I'm exploring the ethical, legal,
and social pations of new neuroscience. So I am thinking
about and trying to systematically address questions about how neuroscience
might challenge our notions of identity, the kinds of world
we want to live in our day to day life
(15:15):
as we know it.
Speaker 1 (15:16):
Karen also happens to know Brandy Ellis, who we heard
from earlier. They both get a lot of invites to
speak to medical students and bioethicists about DBS and sometimes
end up on the same panel. I call Karen to
get a better understanding of where the technology is today,
where it's going, and what the ethical concerns are.
Speaker 4 (15:38):
While there are remarkable clinical effects tied to deep brain stimulation,
there were some puzzling ethical tensions that came up around
deep brain stimulation, and that was for Parkinson's patients. There
were a small number and still are a small number
of patients who experienced really identity kind of changing or
(16:01):
perceived changes in personality and behaviors that they tied to
the technology. So there were questions about who was actually
the narrator of the life at that point. Was it
the technology or was it the person? Was it some
kind of combination And the goal of the intervention at
that time was to alleviate movement problems, and now we
(16:23):
also are exploring brain technologies for intractable depression mood disorders
that can't be treated by anything else. In this case,
some of those fundamental features of one might argue those
or personality features or ways that someone had learned to
interact with the world for a long time with terrible
suffering with depression, that maybe now we're actually using the
(16:44):
deep brain stimulation to change those fundamental features of that
person's life. So it's not a side effect, It's actually
part of the treatment. So how do you manage some
of the tensions in that space around ensuring that the
person who is getting the treatment is in the t
I ever see that they are aware of the types
of experiences they might have in their relationship with that
(17:06):
technology might change over time.
Speaker 1 (17:09):
So would you say that deep brain stimulation could change
who we are?
Speaker 4 (17:15):
It's a question that I explore. So I believe that
all technologies that we create are really a social mirror
for our fears or aspirations for the kind of world
we want to live in. So in that way, you
might ask if these kinds of technologies are tools for
(17:36):
us to better become ourselves, are they collaborators for becoming ourselves?
Or in some cases, are some of these tools identities
in their own right? So these are the types of
questions I'm exploring.
Speaker 1 (17:49):
And you're involved in the essical and legal approaches to
these technologies. So who gets to decide, like, even if
it matters whether they change who we are, who gets
to say in that?
Speaker 4 (18:02):
Thus far, the conversation hasn't really involved a lot of
the lived experience the people who are actually using these technologies,
or might use them in the future, and in a way,
we are all patients in waiting who may one day
need these technologies for a variety of reasons. So a
lot of these ethics conversations, and rightly so, they might
(18:25):
emerge from scholars in the university. They're people who have
close interactions with the research and the evolutions of it,
and we start to see clinical researchers in those conversations
as well, and then you start to see them kind
of enter into the policy maker space. But there hasn't
(18:45):
been a lot of room for people like Brandy Ellis,
and that's a problem, and we don't have a good
systematic approach for that, and so I think it's important
to have formal platforms to give patients and those who
have lived experience with the devices a voice. But right
now it's largely dictated by the people doing the research
(19:06):
and the people who fund that research.
Speaker 1 (19:10):
Could you talk a bit about health equity and who
so far gets access to these treatments.
Speaker 4 (19:15):
Deep brain stimulation requires a lot of expertise and specialized materials.
You're not seeing this readily available and accessible most places,
though in the US I wouldn't say it's easy to
get it. I mean, I think you'd need to go
to a specialty center to get it, for example, and
then you might not have places like low and middle
(19:36):
income countries who have access to expertise or materials.
Speaker 1 (19:39):
And so what does consent mean in this context with
this kind of technology.
Speaker 4 (19:46):
That's a good question, and it's something that ethicists think
a lot about, especially with brain disorders and where cognitive
capacity might be different due to disease or ability. So
it's important for us to note that consent is but
(20:07):
one instrument of ensuring a patient's dignity, their agency in
their care, and their right to health. So consent is
not a perfect tool, and we should recognize that consent
is also not a moment. It's an ongoing exercise where
(20:28):
you don't just it shouldn't end when you sign a
piece of paper. There should be an ongoing dialogue between
the researcher and the participant in the study. I've actually
listened to other patients talk about the way that they
were evaluating the kind of risk was just, you know,
I've already feel like I've got nothing left to live
(20:48):
for and if this can actually help me want to
live again, then maybe, but maybe I don't even care
at that point. So the task is to not have
the patient decide on their own. So they should also
have a family member involved who can help them deliberate.
So there should be someone else present to help. In
(21:08):
the case of some of these studies, family member is
required to also sign onto the study and be involved,
because you need it's very involved for these participants. They
have to come back from many visits, it's time consuming.
They need another perspective to also track day to day
how that patient is progressing.
Speaker 1 (21:29):
And I'm curious. So we're talking about consent of the procedure,
but what about consent when it comes to turning an
implant off.
Speaker 4 (21:37):
Yeah, there was a case where an individual had a
deep brain stimulator put in for a Parkinson's disease, and
they were one of the few cases that developed adverse
effects of mania, and they ended up while the stimulator
was on gambling, ruining their marriage. And the clinical team
(22:02):
had to decide, you know, should this person The person
has two choices, this patient, this patient can keep the
stimulator on. Their motor symptoms are fairly resolved, but they're
living in such a way that basically they should be
institutionalized because of their reckless behavior and related to the mania.
(22:26):
But if they had the device turned off, then the
patient would be confined to a bed because they wouldn't
be able to move around. So what should we do here?
But the first step was the team needed to decide
were they going to ask the patient if he wanted
the stimulator on or off when he was on or
when he was off. So it was a very tricky
(22:50):
situation and they ended up asking the patient while he
was off, thinking that this was his more authentic state
of who he was. And when they asked the patient
what he wanted to do with a stimulator off, he
said he'd rather have it on, so he wanted it
left on.
Speaker 1 (23:08):
And how common is it that deep brain stimulation has
led to the negative consequences of people's behavior.
Speaker 4 (23:15):
It's actually not that common. So there are a handful
of cases that have been documented that ethicis and scholars
have really focused on and written tons of papers. In fact,
new ethicists cut their teeth on this type of case study,
but in reality, there's not that many cases. But still
(23:37):
it's worth paying attention to because that's still one person's
life who's dramatically changed in a way. They didn't want
and you don't want that to happen again.
Speaker 1 (23:44):
Yeah, for sure. So I'm just curious with these devices,
when would you say that they cross over from being
therapeutic to actually providing some kind of enhancement.
Speaker 4 (23:56):
The therapy enhancement line has always been a blurry on.
This really does tie to the kind of a knee
jerk reaction of the notion of who has the right
to change the human condition and society? Who is the
right to play God? This is the name of the series.
(24:17):
Sometimes it's not the playing god part that people are
worried about, it's the playing part. So are you creating
new circumstances that are irresponsible? Are you allowing humans to
go beyond their swim lanes then they shouldn't. Are you
overriding what is given? But we also know that many
(24:41):
people are born with certain disabilities, and in those cases
we don't say it's playing God, typically to try to
cure them. So in that case, it's not just playing God,
But how do we play God in the right way?
Speaker 1 (24:52):
Well, thank you so much, Karen. This has been really
really fascinating to hear all about the important way that
you're doing today. Brandy Ellis is grateful that she went
through with the DBS implant. Now that she's back to
feeling like herself, she seeks out opportunities to speak with
physicians and researchers to help them understand what that dark
(25:15):
period of depression and suicidal thinking was like for her.
She feels that implant essentially saved her life and wants
be able to know about how much it helped her.
Speaker 2 (25:26):
I want to make it clear that the DBS didn't
change me. I am not a different person because of
this implant. Depression changed me. Those years of suffering the
depression altered my personality, every aspect of my life. The
(25:47):
DBS did not change me. It restored me.
Speaker 1 (25:57):
Next time on playing God dging category of drugs can
cure debilitating and even fatal diseases, diseases that were previously untreatable.
But often these so called miracle drugs can cost a fortune,
as one mother learned when her child was diagnosed with
a fatal disease.
Speaker 2 (26:19):
We were talking about him living.
Speaker 4 (26:21):
I mean, you'll pay anything, Like I would say that quickly, like.
Speaker 2 (26:26):
Absolutely, I would pay anything.
Speaker 4 (26:27):
But then how can I pay anything? Like?
Speaker 1 (26:31):
How do I pay one hundred and twenty five thousand.
Speaker 2 (26:34):
Dollars a dose. Just get that out three times a year.
That's impossible.
Speaker 1 (26:40):
Join us next week for more Playing God. Thank you
to our guests Brandy Ellis, Karen Rommelfanger, and Patricio rev
paulse Playing God is a co production of Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics. Emily Bourne
is our producer. This episode was also produced by Sophie
(27:03):
Crane and Lucy Sullivan. Our editors are Karen Chakerjee and
Kate Parkinson Morgan. Mixing by Samir Sengupta, Theme music by
Echo Mountain, Engineering support from Sarah Bruguer and Amanda Kaiwang.
Show art by Sean Krney, fact checking by David jar
(27:24):
and Arthur Gompertz. Our executive producer is Justine Lang at
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with a Melia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.
Come back next week for more Playing God. If you
(27:52):
have enjoyed hearing about these stories and want to know
more about the history of bioethics. We have been creating
something very special for you. We have an oral history
collection with the founding figures of modern bioethics in America.
The collection is called Moral Histories, and in it you'll
hear from people who are in the room as some
of the most significant decisions were made about how to
(28:15):
manage new technological developments in science and medicine. Go to
Bioethics dot Jhu dot edu forward slash Moral Histories to
learn more.
A quick note before we start the show. This episode
is about depression and treatment for depression. It contains references
to suicide. If you or someone you know is struggling
with thoughts of suicide, we have links to hotlines and
resources in our show notes.
Speaker 2 (00:17):
I am completely dependent upon electricity as medicine and there
will never be a point in my life where I
can quote go off the grid because I can never
be without electricity for my own survival.
Speaker 1 (00:35):
Brandy Ellis calls herself a cyborg. She has an electrical
implant in her brain twelve years ago. Before she got
the implant, she often struggled with depression. She says it
has made her feel more like herself. Brandy was first
diagnosed with depression when she was twenty. At that time,
she slept twenty hours a day and she cried often
(00:58):
when she was awake for no reason. So she saw
a therapist and went on medication, and she felt better
like herself again. She consulted with her doctor and decided
to stop taking medication, but a few years later her
symptoms came back. Starting back up with medication and therapy
pulled her out of it. The depression lifted. This cycle
(01:21):
went on for over a decade, but when she was
thirty two, the depression came back, and this time it
felt different.
Speaker 2 (01:30):
I wasn't sleepy, I was anxious, and I had insomnia,
and I was less weepy and more cranky.
Speaker 1 (01:41):
She had assumed her depression would resolve like it had
every other time, once she found the right combination of
medication and therapy, but for four years nothing helped.
Speaker 2 (01:52):
I tried over two dozen different medications of every conceivable type,
and that is not counting all the various dosages of
those medications and all the various combinations of multiple medications.
Speaker 1 (02:09):
Meanwhile, she couldn't hold a job. She moved back home
to Dowray Beach, Florida, where her parents supported her financially,
but not everyone in her life was so supportive. Some
relatives told her that her depression was her own fault,
that she was just being lazy. For the first time
in her life, Brandy had thoughts of suicide.
Speaker 2 (02:32):
He never understood what it meant to be suicidal in
any of my previous depressive episodes, and I refer to
it now as my brain tried to kill me and
I was trying to survive.
Speaker 1 (02:45):
As a last result, Brandy's doctors suggested she tried something
called electroconvulsive therapy. It's a procedure where small amounts of
electricity are sent through the brain to relieve mental health symptoms.
It helped, but the relief only lasted for a couple
of weeks. Brandy's doctors said that in order to keep
her symptoms at bay, she'd have to keep coming back
(03:08):
in for treatment every month indefinitely.
Speaker 2 (03:11):
And that was just something that I could not do forever.
So it did look like I was going to be
suffering like this for the rest of my life, and
I didn't know how long I could survive that kind
of life.
Speaker 1 (03:30):
Brandy's doctors said there was nothing left to try, but
she wasn't ready to give up. She scoured the internet
for other treatment options and did an online mental health
support group. She read about a clinical trial that seemed promising.
Researchers at Emory University were studying a type of treatment
called deep brain stimulation. She said she didn't have high
(03:53):
hopes that it could help her, but she thought it
might be worth doing anyway.
Speaker 2 (03:58):
I felt like I was going to do the brain
surgery and then it would not work, and I would
still have this terminal depression and I would eventually die
rather than continue to suffer. But I thought that I
could be a data point that helped people who came
(04:18):
after me.
Speaker 1 (04:20):
I'm Lauren and Rora Hutchinson. I'm the director of the
Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.
On today's show, we're talking about the revolutionary technology of
deep brain stimulation or DBS. DBS is a highly effective
treatment for neurological conditions in the rare instances that patients
(04:44):
aren't responding to other types of treatment. But computer based
implants can change more about the brain than the disease
they're meant to treat, which raises all kinds of ethical dilemmas.
So when it comes to the possib ability of altering
our personalities by implanting electronics, where do we draw the line?
(05:07):
Are we giving computers too much control over who we
are when we allow them to alter fundamental human traits
like our emotions? And if it's okay to change our moods,
what about other things like our intelligence? From Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics, this is
(05:28):
playing god.
Speaker 3 (05:36):
This is a neurosurgical procedure that involves the implementation of
thin electrodes that are, i say, like the thickness of spaghetti.
Speaker 1 (05:47):
This is Patricio Riva Porse. He was one of the
researchers conducting the study that Brandy came across. These days,
he's the director of the Treatment Resistant Depression Clinic at
Emery's a lot of his time working on deep brain
stimulation and explaining how it works.
Speaker 3 (06:05):
The electrodes is implanted with a canula that keeps it,
you know, kind of rigid until the point where you
hit the target.
Speaker 1 (06:13):
The electrodes, he says, empowered by a device that's similar
to a pacemaker, which gets inserted under the patient's skin
near the collar bone. Before researchers brought DBS to people
with depression, they were already using it for conditions like
Parkinson's disease.
Speaker 3 (06:30):
This idea came from that application into saying, well, what
if you can deliver small amounts of electricity to specific
areas of the brain to stimulate circuits that are related
to mood and emotions towards the circus that control those
(06:51):
behaviors and those thoughts. In Parkinson's disease. The usual targets
that are chosen are the ones that are involved in
treating the tremor or the rigidity, and in depression, the
circuits are quite different. Different areas were chosen to stimulate,
(07:12):
and it seems to be that patients with depression have
an increase in the activity in that area. And the
thought was, well, what if you implant an electro there
and you deliver a lot of electricity there. What you
do is you put that area in an inhibited mode.
So he turned it down.
Speaker 1 (07:32):
Patricio says that by the time Brandy came across his
clinical trial, there was already some published research showing that
his theory helped promise A small study show that out
of six initial patients, DBS helped four of them. After
six months of treatment, they were no longer depressed.
Speaker 3 (07:51):
The satisfying aspect of deep brain stimulation and other implantable
devices is that when patients get well, they stay well.
Continuous delivery of small amounts of electricity, you know, as
as simple as it may seem, it seems to be
a treatment that is sustained over time. That's I think
is what is so hopeful about these implantable neuromodulation techniques.
Speaker 1 (08:17):
He says, the procedure comes with risks too, like brain
hemorrhage or infection. It is brain surgery after all.
Speaker 3 (08:25):
And then you have negative outcomes of what happens if
treatment doesn't work right. These are patients that are very,
very ill with depression for years. They have a much
higher risk of suicide. And unfortunately, across the trials there
(08:46):
have been patients who have died of suicide. I have
not seen patients who because of the DVF they attempted suicide.
I think that we attribute the suicide, of course as
the ultimate negative outcome, but as the failure of the treatment,
of treating the illness that we want to treat. Right
(09:08):
as if you were having a clinical trial that treats
advanced cancer, if patients die of that cancer, you don't
say that it's because of the treatment.
Speaker 1 (09:17):
All these things were explained to Brandy when she first
contacted Patricio and the other researchers back in twenty eleven,
and none of it scared her off. In fact, almost
the opposite.
Speaker 2 (09:28):
It sounds terrible, but I felt like the people who
thought that I wasn't trying hard enough to get well
would change their mind if they knew that I had
had brain surgery trying to get well.
Speaker 1 (09:44):
Not everyone was convinced. To some of her family members,
DBS didn't sound like medicine. It sounded like a shortcut,
just turning her emotions over to the control of a computer.
Speaker 2 (09:57):
After a few.
Speaker 1 (09:58):
Appointments to determine whether she was a good candidate, Brandy
was accepted to the clinical trial for DBS. She moved
to Atlanta, where she'd need to live for at least
a year.
Speaker 2 (10:10):
The surgery itself was exhausting. It was very long. So
it starts way before dawn, and you go in and
they give you a nice IV to keep you calm,
and they start drilling a frame into your skull.
Speaker 1 (10:29):
The frame is temporary. It's just to stabilize the patient's
head during the operation, because for the first part of
the surgery Brandy would be wide awake.
Speaker 2 (10:41):
Then you go into the operating room and they bolt
that frame to the operating table, and this way you
absolutely cannot move your brain, your head, any part of
your upper body.
Speaker 1 (10:55):
The operating room was crowded with neurosurgeons and the research team.
Surgeons started stimulating different points in the target region of
Brandy's brain, trying to pinpoint where to place her implant.
Each time, they asked her if she felt anything, and
at one point she did.
Speaker 2 (11:13):
It felt like gravity decreased a little bit, like I
did not. My mass was less, you know it was.
I felt lighter, like more air came into my body.
Speaker 1 (11:25):
The surgeons put Brandy under anesthesia, placed the implant in
that spot, and sewed her back up. The surgeons gave
Brandy's body a few weeks to heal before turning on
her device. By chance, that date happened to be the
eleventh of November twenty eleven.
Speaker 2 (11:45):
I thought eleven eleven eleven was an amazing day to
become a cyborg.
Speaker 1 (11:51):
Cyborg, of course, is a science fiction term, not a
medical one, but she likes the way it sounds. When
the implant was initially turned on, Brandy didn't notice much
of a change, but about two months later, she has
what she calls her first good day.
Speaker 2 (12:07):
I was still very very sick, still very very depressed,
but I could get out of bed and brush my
teeth and maybe leave the house, and I didn't hate
my existence.
Speaker 1 (12:23):
Slowly, Brandy started having more good days. Six months after
her device was switched on, she felt significantly better. By
the time she'd had it on for eleven months, she
no longer met the diagnostic criteria for clinical depression.
Speaker 2 (12:40):
I did my best to be very mindful about adding
one thing back at a time, you know, getting a relationship.
I met my partner then, and I started to be
able to support myself and go on trips with friends
and build a life again.
Speaker 1 (13:03):
Brandy's surgery was twelve years ago now, and she's still thriving.
Speaker 2 (13:07):
In that time.
Speaker 1 (13:09):
She's only felt depressed once out of nowhere. About two
years after the surgery, she'd started feeling weepy and exhausted,
so she went to see her research team. They discovered
that her device had had a minor electronic glitch and
it had turned itself off.
Speaker 2 (13:29):
And then realizing that was why was when the light switched.
You know, that was when I realized that this absolutely
was what was responsible from my recovery. Was this implant,
This entire bonus life that I have, this sort of
extra life from a video game that I got from
(13:53):
this device is the only reason that I am still
alive today.
Speaker 1 (14:02):
After hearing Brandy's story, I wanted to know more about
the ethical issues surrounding DBS, like how valid are the
concerns that DBS outsources too much of a person's self
to a computer. So I talked to someone who's thinking
critically about the current and future applications of this technology
(14:22):
and the thawny ethical questions that surround it. That's after
the break. Karen Ramelfhanger is a neuroscientist and ethics scholar.
She's the founding director of the Institute of Neuroethics. She
(14:46):
explores the potential trajectories of new technologies like DBS and
the various ethical, medical, and legal ramifications.
Speaker 4 (14:55):
On a day to day basis. I'm exploring the ethical, legal,
and social pations of new neuroscience. So I am thinking
about and trying to systematically address questions about how neuroscience
might challenge our notions of identity, the kinds of world
we want to live in our day to day life
(15:15):
as we know it.
Speaker 1 (15:16):
Karen also happens to know Brandy Ellis, who we heard
from earlier. They both get a lot of invites to
speak to medical students and bioethicists about DBS and sometimes
end up on the same panel. I call Karen to
get a better understanding of where the technology is today,
where it's going, and what the ethical concerns are.
Speaker 4 (15:38):
While there are remarkable clinical effects tied to deep brain stimulation,
there were some puzzling ethical tensions that came up around
deep brain stimulation, and that was for Parkinson's patients. There
were a small number and still are a small number
of patients who experienced really identity kind of changing or
(16:01):
perceived changes in personality and behaviors that they tied to
the technology. So there were questions about who was actually
the narrator of the life at that point. Was it
the technology or was it the person? Was it some
kind of combination And the goal of the intervention at
that time was to alleviate movement problems, and now we
(16:23):
also are exploring brain technologies for intractable depression mood disorders
that can't be treated by anything else. In this case,
some of those fundamental features of one might argue those
or personality features or ways that someone had learned to
interact with the world for a long time with terrible
suffering with depression, that maybe now we're actually using the
(16:44):
deep brain stimulation to change those fundamental features of that
person's life. So it's not a side effect, It's actually
part of the treatment. So how do you manage some
of the tensions in that space around ensuring that the
person who is getting the treatment is in the t
I ever see that they are aware of the types
of experiences they might have in their relationship with that
(17:06):
technology might change over time.
Speaker 1 (17:09):
So would you say that deep brain stimulation could change
who we are?
Speaker 4 (17:15):
It's a question that I explore. So I believe that
all technologies that we create are really a social mirror
for our fears or aspirations for the kind of world
we want to live in. So in that way, you
might ask if these kinds of technologies are tools for
(17:36):
us to better become ourselves, are they collaborators for becoming ourselves?
Or in some cases, are some of these tools identities
in their own right? So these are the types of
questions I'm exploring.
Speaker 1 (17:49):
And you're involved in the essical and legal approaches to
these technologies. So who gets to decide, like, even if
it matters whether they change who we are, who gets
to say in that?
Speaker 4 (18:02):
Thus far, the conversation hasn't really involved a lot of
the lived experience the people who are actually using these technologies,
or might use them in the future, and in a way,
we are all patients in waiting who may one day
need these technologies for a variety of reasons. So a
lot of these ethics conversations, and rightly so, they might
(18:25):
emerge from scholars in the university. They're people who have
close interactions with the research and the evolutions of it,
and we start to see clinical researchers in those conversations
as well, and then you start to see them kind
of enter into the policy maker space. But there hasn't
(18:45):
been a lot of room for people like Brandy Ellis,
and that's a problem, and we don't have a good
systematic approach for that, and so I think it's important
to have formal platforms to give patients and those who
have lived experience with the devices a voice. But right
now it's largely dictated by the people doing the research
(19:06):
and the people who fund that research.
Speaker 1 (19:10):
Could you talk a bit about health equity and who
so far gets access to these treatments.
Speaker 4 (19:15):
Deep brain stimulation requires a lot of expertise and specialized materials.
You're not seeing this readily available and accessible most places,
though in the US I wouldn't say it's easy to
get it. I mean, I think you'd need to go
to a specialty center to get it, for example, and
then you might not have places like low and middle
(19:36):
income countries who have access to expertise or materials.
Speaker 1 (19:39):
And so what does consent mean in this context with
this kind of technology.
Speaker 4 (19:46):
That's a good question, and it's something that ethicists think
a lot about, especially with brain disorders and where cognitive
capacity might be different due to disease or ability. So
it's important for us to note that consent is but
(20:07):
one instrument of ensuring a patient's dignity, their agency in
their care, and their right to health. So consent is
not a perfect tool, and we should recognize that consent
is also not a moment. It's an ongoing exercise where
(20:28):
you don't just it shouldn't end when you sign a
piece of paper. There should be an ongoing dialogue between
the researcher and the participant in the study. I've actually
listened to other patients talk about the way that they
were evaluating the kind of risk was just, you know,
I've already feel like I've got nothing left to live
(20:48):
for and if this can actually help me want to
live again, then maybe, but maybe I don't even care
at that point. So the task is to not have
the patient decide on their own. So they should also
have a family member involved who can help them deliberate.
So there should be someone else present to help. In
(21:08):
the case of some of these studies, family member is
required to also sign onto the study and be involved,
because you need it's very involved for these participants. They
have to come back from many visits, it's time consuming.
They need another perspective to also track day to day
how that patient is progressing.
Speaker 1 (21:29):
And I'm curious. So we're talking about consent of the procedure,
but what about consent when it comes to turning an
implant off.
Speaker 4 (21:37):
Yeah, there was a case where an individual had a
deep brain stimulator put in for a Parkinson's disease, and
they were one of the few cases that developed adverse
effects of mania, and they ended up while the stimulator
was on gambling, ruining their marriage. And the clinical team
(22:02):
had to decide, you know, should this person The person
has two choices, this patient, this patient can keep the
stimulator on. Their motor symptoms are fairly resolved, but they're
living in such a way that basically they should be
institutionalized because of their reckless behavior and related to the mania.
(22:26):
But if they had the device turned off, then the
patient would be confined to a bed because they wouldn't
be able to move around. So what should we do here?
But the first step was the team needed to decide
were they going to ask the patient if he wanted
the stimulator on or off when he was on or
when he was off. So it was a very tricky
(22:50):
situation and they ended up asking the patient while he
was off, thinking that this was his more authentic state
of who he was. And when they asked the patient
what he wanted to do with a stimulator off, he
said he'd rather have it on, so he wanted it
left on.
Speaker 1 (23:08):
And how common is it that deep brain stimulation has
led to the negative consequences of people's behavior.
Speaker 4 (23:15):
It's actually not that common. So there are a handful
of cases that have been documented that ethicis and scholars
have really focused on and written tons of papers. In fact,
new ethicists cut their teeth on this type of case study,
but in reality, there's not that many cases. But still
(23:37):
it's worth paying attention to because that's still one person's
life who's dramatically changed in a way. They didn't want
and you don't want that to happen again.
Speaker 1 (23:44):
Yeah, for sure. So I'm just curious with these devices,
when would you say that they cross over from being
therapeutic to actually providing some kind of enhancement.
Speaker 4 (23:56):
The therapy enhancement line has always been a blurry on.
This really does tie to the kind of a knee
jerk reaction of the notion of who has the right
to change the human condition and society? Who is the
right to play God? This is the name of the series.
(24:17):
Sometimes it's not the playing god part that people are
worried about, it's the playing part. So are you creating
new circumstances that are irresponsible? Are you allowing humans to
go beyond their swim lanes then they shouldn't. Are you
overriding what is given? But we also know that many
(24:41):
people are born with certain disabilities, and in those cases
we don't say it's playing God, typically to try to
cure them. So in that case, it's not just playing God,
But how do we play God in the right way?
Speaker 1 (24:52):
Well, thank you so much, Karen. This has been really
really fascinating to hear all about the important way that
you're doing today. Brandy Ellis is grateful that she went
through with the DBS implant. Now that she's back to
feeling like herself, she seeks out opportunities to speak with
physicians and researchers to help them understand what that dark
(25:15):
period of depression and suicidal thinking was like for her.
She feels that implant essentially saved her life and wants
be able to know about how much it helped her.
Speaker 2 (25:26):
I want to make it clear that the DBS didn't
change me. I am not a different person because of
this implant. Depression changed me. Those years of suffering the
depression altered my personality, every aspect of my life. The
(25:47):
DBS did not change me. It restored me.
Speaker 1 (25:57):
Next time on playing God dging category of drugs can
cure debilitating and even fatal diseases, diseases that were previously untreatable.
But often these so called miracle drugs can cost a fortune,
as one mother learned when her child was diagnosed with
a fatal disease.
Speaker 2 (26:19):
We were talking about him living.
Speaker 4 (26:21):
I mean, you'll pay anything, Like I would say that quickly, like.
Speaker 2 (26:26):
Absolutely, I would pay anything.
Speaker 4 (26:27):
But then how can I pay anything? Like?
Speaker 1 (26:31):
How do I pay one hundred and twenty five thousand.
Speaker 2 (26:34):
Dollars a dose. Just get that out three times a year.
That's impossible.
Speaker 1 (26:40):
Join us next week for more Playing God. Thank you
to our guests Brandy Ellis, Karen Rommelfanger, and Patricio rev
paulse Playing God is a co production of Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics. Emily Bourne
is our producer. This episode was also produced by Sophie
(27:03):
Crane and Lucy Sullivan. Our editors are Karen Chakerjee and
Kate Parkinson Morgan. Mixing by Samir Sengupta, Theme music by
Echo Mountain, Engineering support from Sarah Bruguer and Amanda Kaiwang.
Show art by Sean Krney, fact checking by David jar
(27:24):
and Arthur Gompertz. Our executive producer is Justine Lang at
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with a Melia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.
Come back next week for more Playing God. If you
(27:52):
have enjoyed hearing about these stories and want to know
more about the history of bioethics. We have been creating
something very special for you. We have an oral history
collection with the founding figures of modern bioethics in America.
The collection is called Moral Histories, and in it you'll
hear from people who are in the room as some
of the most significant decisions were made about how to
(28:15):
manage new technological developments in science and medicine. Go to
Bioethics dot Jhu dot edu forward slash Moral Histories to
learn more.
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Nikki Glaser Podcast
Every week comedian and infamous roaster Nikki Glaser provides a fun, fast-paced, and brutally honest look into current pop-culture and her own personal life.