She had lived with severe

chronic epilepsy for decades ,

but she received a neural device

— known as a brain – computer

interface ( BCI ) — as part of a

clinical trial .

It detected oncoming seizures

, sending an alert to a

handheld device that gave Ms

Leggett enough of a warning for

her to administer prophylactic

clonazepam .

Her seizures reduced from

three a month to zero .

But within two years , this

transformation was deliberately

reversed . The trial ended

BCIs in clinical trials is lead-

systems ,” he said .

because the company behind it ,

ing to more cases of ‘ device

“ Elon Musk ’ s Neuralink is in

NeuroVista , failed to generate

abandonment ’.

the same position as us .

interest from investors . So Ms Leggett returned to a hospital in Melbourne to have

Explantation

“ Imagine a device can forecast

“ Let ’ s say you get meningitis or the electrodes do not work reliably over long periods of

the BCI surgically removed .

your seizures , allowing you to

time .

“ The device was like an alien

take medication , so you are sta-

“ Then the trial will stop . And

at first ; you grow gradually into

ble after 49 years of chronic epi-

Elon Musk , the richest man in

it and get used to it , so it then

lepsy , and then suddenly the

the world , will not be able to

becomes a part of every day ,”

company tells you it has to be

keep the trial going .”

she told researchers . “ I felt like I could do anything .

explanted because it does not have any money ,” he said .

“ That is quite traumatic .”

Funding

After the NeuroVista trial folded

“ I could drive ; I could see

It has led some of the subjects

in 2013 , Professor Cook said “ a

people ; I was more capable of

taking part in trials to ‘ resist ’

lot of people ” came to him argu-

making good decisions .” She is not the only one affected .

BCI removal — trying to keep the device and maintain it without the support of whichever com-

Professor Mark Cook .

ing that the Federal Government should intervene and keep the BCIs running .

Startups

While BCIs have become commer-

pany set up the trial . In the case of the US-based

BROADEN trial — which ran

suggestion was that she was forced to undergo surgery to

not functioning ,” he told Australian Doctor .

But he said the cost and patient numbers for BCI trials made it impossible .

cially available for Parkinson ’ s dis-

from 2008 to 2012 and used deep

have the implant removed .

“ While certainly she would

You can get a sense of why .

ease , tremor and epilepsy , trials of

brain stimulation implants to

However , case report co-au-

have preferred to keep using it , it

To generate the material in

experimental BCIs have contin-

treat patients with depression —

thor Professor Mark Cook , the

is wrong to say there are people

the study cost about $ 200 mil-

ued , including the use of targeted

the trial was terminated because

neurologist who led the BROADEN

getting brain implants removed

lion for the 15 patients involved .

deep brain stimulation to treat

the effect did not reach statisti-

“ If only one person benefited

depression .

Just this year , amid a flurry of publicity , Elon Musk ’ s company Neuralink implanted its first BCI into a man with quadriplegia .

It allowed the patient , Noland

cal significance .

But Professor Gilbert said some patients wanted to keep the devices that they felt were providing a benefit .

They were successful , but the

‘ It is wrong to say there are people getting brain implants removed against their will .’

— Professor Mark Cook

from a drug , should the government build a factory to make that drug for one person ?” he asked .

He said it may have been different if a company had folded

Arbaugh , to control a computer

reason was because brain stim-

after selling a proven and com-

cursor with his brain impulses and play computer games — such

ulation had by then become an established treatment for Par-

trial , said this was inaccurate . He said the device was turned

against their will .”

He said the negative per-

mercialised device to patients . But for him , the key issue was

as chess , RuneScape and Civiliza-

kinson ’ s disease and there was

off when the trial ended ; the

ception of BCI trials stemmed ,

that the clinical trial partici-

tion — for the first time in almost

an infrastructure in place within

surgery to remove it , in itself ,

in part , from participants not

pants were fully informed about

a decade .

the healthcare system that could

did not take away Ms Leggett ’ s

viewing them in the same way

what would possibly and proba-

But neuroethicist Professor

absorb those patients .

ability to manage her seizures .

as other clinical trials , such as

bly happen afterwards depend-

Frédéric Gilbert , co-author of a

In the case of Ms Leggett ,

“ There was no way to analyse

drug trials .

ing on the trial ’ s results .

new case report on Ms Leggett ,

that did not happen .

the data from the device , and

“ Fundamentally , there is a

“ Patients in the NeuroVista

has warned that the increas-

The way her surgery was

there was no point having the

failure to understand that we

trial were really brave because

ing number of startups testing

reported in the media , the

device remain in situ as it was

are not providing commercial

we did not know that it would