IEEE Technology and Society Magazine - June 2015 - 6

the chest in both VNS and DBS, but
in the DBS procedure, one or more
leads are implanted in the brain,
targeted through burr holes in the
skull, and locked into place [2].
VNS and DBS were unavailable
techniques when my sister first
became ill, but I do recollect vividly
the results of ECT upon her. Post the
treatments, we lost her well and truly
into a dark space one cannot reach
-- she was placed on higher dosages
of antidepressants for the weeks to
follow, and it was apparent to us she
was not only in mental anguish but
clearly in physical difficulties as well.
Doctors claimed clinically that she
"did not respond to the treatment,"
but never acknowledged that the
ECT process might have caused her
any short-term distress whatsoever.
In fact, we were told: "There is no
change in her condition. She continues to be as she was before the
treatment." That was debatable in my
eyes. Even though I was just a kid, I
observed it took a good three months
to get my sister back to where she
was before the ECT treatment. But
she was only one participant among
many in clinical trials, and in no way
do I generalize her outcomes to be
the outcomes of all ECT patients.
VNS and DBS are again very different techniques, and while VNS is
used as an adjunct therapy for major
depression, DBS is mainly reserved
for treating Parkinson's disease and
has had only limited approval for
combatting intractable obsessive
compulsive disorder (OCD). However, what I gained from those childhood experiences is that human
life is precious and experimentation
can have some very adverse side
effects without any direct benefits
to the individual sufferer. Doctors
need to be held accountable, caregivers and patients with MDD must
be told clearly about the risks, and
VNS patients must be monitored
closely into the longer-term. I am

alarmed at the lack of qualitative
research being conducted across the
spectrum of implantable devices in
the health sector. And that is an area
I intend to personally address in my
own research in years to come.
To this day, I believe my sister
was in no condition to consent to
the treatment she received. At the
time she intermittently thought I was
Brooke Shields and that my siblings
were other television personalities.
She was delusional and completely
unaware of herself. Prior to the trial
my sister participated in, my parents
had no real idea what ECT was, save
for what they had heard anecdotally.
As my sister's "guardians," my parents did not understand how ECT
would be administered and were not
given the option to accompany her
during the actual treatment. They
were simply told that my sister would
wear something on her head and
have an electrical current travel all
around it to hopefully "zap" her back
to normal. They were not informed
of what the risks might be to their
beloved daughter, although they were
clear it was all "experimental." It was
also emphasized, that this "electroshock treatment" was the only other
alternate route of exploration to help
my sister get better. I remember their
expectations being raised so high,
only to be dashed after each treatment [4]. My parents had to rely on
an interpreter as my father did not
speak English and my mother only
broken English. When one was not
available my brother and sisters and I
would do the translation.
In the end, when all other routes
failed, my family turned to God for
help. Alongside an excellent medical and health team (psychiatrist,
social worker, general practitioner),
and a loving home environment, it
was faith that gave my family the
will to go on facing everyday issues,
as my sister slowly regained parts of
herself to become functional again,
IEEE Technology and Society Magazine

such as her mobility and speech.
As the saying goes "prayer works,"
and while it might not make rational sense to believe in miracles, I
remember witnessing these on at
least a few occasions.
A few months ago, the cover of
the February 2015 issue of IEEE
Spectrum was graced with the title:
"Hot-wiring the nervous system:
implanted in the brain, smart-systems are defeating neurological disorders" (pp. 28) [5]. As someone
who has spent the greater part of
their academic career studying surveillance, risk, privacy and security,
trust, and control, I have long reckoned that if we can "defeat" neurological disorders using implantable
devices, then we can also "construct" and "trigger" them willingly,
as well. But the point of my editorial is not to discuss the future of
dynamic neural stimulators; we can
debate that in another issue of T&S
Magazine. Rather my point is to try
to generate discussion about some
of the fundamental issues surrounding the socio-ethical implications of
penetrating the brain with new technologies, especially those that are
remotely triggerable [6].
While the early studies for VNS
with respect to MDD look promising, we need to acknowledge we
are still at the very beginning of
our investigations. I am personally
more circumspect about published
figures that simply categorize subjects post implantation using minimal labels like "non-responders,"
"responders" and "achieved remission" [7]. Longitudinal data will give
us a clearer picture of what is really
happening. DBS, on the other hand,
has been used to treat well over
75 000 persons, mostly suffering
from movement disorders [2], but it
is increasingly being piloted to treat
OCD [8]. This is a call to the research
community, to publish more widely
about some of the complications,
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june 2015

Table of Contents for the Digital Edition of IEEE Technology and Society Magazine - June 2015