research. Working with and for
children, which is the cornerstone
of the child-computer interaction
community, raises a number of ethical
questions.
ETHICAL QUESTIONS
I’ve come to think that any discussion
of the ethics of conducting research
with vulnerable populations, such
as children in the developing world,
should be grounded in a three-part
foundation. The first is that we
must be willing to take the time and
make the effort to be aware of and
ask ourselves some of the difficult
questions that arise when working with
vulnerable populations. The second
is that we must understand that we
view the world through a lens of our
own experience. In order to better
understand vulnerable populations, we
need to be willing to step away from
this lens, ask questions, and listen
deeply to the answers. The third is
that we should consider the Belmont
Report’s tenets of welfare, justice,
and respect ( https://www.hhs.gov/
ohrp/regulations-and-policy/belmont-report/ index.html) in our dealings
with vulnerable populations, keeping
in mind that often what we ought to do
is not always consistent with what we
can do.
With this tripartite foundation in
mind, there are five issues that I came
up against in my work in Nepal. I pose
them as questions here, which I urge
you to consider when you work with
any vulnerable population, whether
that be children living in poverty or
people of any age with physical or
mental health challenges or the elderly
in developed countries.
First, how can we feel relatively
certain that we are providing benefits to
the population we are working with? We
may think that children can benefit
from participating in our research
or from using the computational
systems that result from our research.
But is this true? How do we know if
the children we study are actually
benefiting from our research? In
answering this question, it is important
to understand that we all make
assumptions about what children’s
development, education, and even their
lives should look like.
In Crazy Like Us, the Globalization
of the American Psyche [ 3], Ethan
Watters suggested that mental health
professionals from industrialized
countries have generated modern
theories of the human psyche, created
treatments based on these models,
and then exported them to many of
the world’s cultures, sometimes with
devastating consequences. Can we
really take what we know about mental
health and well-being and transfer it to
other cultures? The assumption behind
this commodification is that everyone
is crazy like us. But is this true? Before
we can assess potential benefit, we
must be aware of the assumptions we
use to determine what benefit means.
In Nepal, we did this by working
closely with the community at the
school, including Nepali counselors,
to set goals for the benefits we thought
might come from our research.
Based on the results from informal
interviews, as well as detailed
observational notes and photographs
taken on site visits to the school and
to the surrounding communities, we
returned to Canada and built a BCI
application called Mind-Full (http://
www.mindfullapp.ca ). The system
provided neurofeedback depicted in
ways that we hoped the children could
understand, and that would make
their invisible brain states visible to
them as they learned to self-regulate.
Mind-Full comprised three games.
Two of the games showed children how
to use their bodies to create calmer
brain states (i.e., self-regulate anxiety),
and the other game helped them learn
to focus their attention. The games
were based on everyday activities
that the children already knew how
to do, like blowing on a pinwheel to
make it spin. The act of blowing (or
deep breathing) produces a calmer
brain state. We also built a second
application that let the counselors
calibrate the EEG data, adjust the
difficulty of the games, and see each
child’s brain state in real time. It
would not have been possible to create
this kind of system without trying to
see the world through the eyes of the
Nepali children and their caregivers.
Once we had the Mind-Full system
designed and usability-tested in
Canada, we went back to Nepal to
conduct a controlled field experiment
at the school. When we developed
the assessment instruments for the
Showing rather than telling what children will do in Mind-Full sessions.
Can we really take what
we know about mental
health and well-being
and transfer it to other
cultures?