INTERACTIONS.ACM.ORG 74 INTERACTIONS NOVEMBER–DECEMBER2017
In this forum we celebrate research that helps to successfully bring the benefits of computing technologies to children,
older adults, people with disabilities, and other populations that are often ignored in the design of mass-marketed products.
— Juan Pablo Hourcade, Editor
FORUM UNIVERSAL INTERACTIONS
Alissa N. Antle, Simon Fraser University
The Ethics of Doing Research
with Vulnerable Populations
comprehensive university. I live in
Vancouver, Canada, a city with one of
the highest quality-of-life ratings in
the world ( https://www.mercer.ca/en/
have kind and talented friends and
colleagues. I have faced little prejudice
in raising my two sons as a separated
single mother. I had many of the
privileges that my culture offered,
so I was a little suspect of my own
motivation. It’s those doubts that
led me to deeply examine my own
ethical views and practices and bring
them to the forefront of my research,
rather than thinking of them as an
afterthought or as some annoying
paper work that I had to get done.
This commitment to stop and really
think about what I was doing with
my research in Nepal was critical to
deepening my understanding of the
ethical issues that arise when working
with vulnerable populations.
Most ethics boards classify all
children as a vulnerable population.
The reason given for this is that
children lack the necessary cognitive
capacity to decide whether or not to
participate in most research. It may
be difficult for them to foresee the
risks or potential benefits to their own
well-being or to understand how the
conditions of research may or may
not be in their own best interests.
Children who have special challenges,
such as those with dyslexia, ADHD,
developmental delays, or mental health
issues, or children living in poverty,
who may be illiterate or repressed, may
have even less capacity to understand
and give assent to participate in
I went to Nepal to attend the Advances
in Computing Entertainment (ACE)
conference. There, along with one of
my graduate students, I led a workshop
to introduce design thinking to
Nepali children at a private school in
Kathmandu [ 1]. After the conference,
I went to the ecotourism town of
Pokhara to vacation for a few days.
Which is when I began working with
children who live in poverty—instead
of going on vacation!
There’s a stark juxtaposition of
Westerners trekking and paragliding
in the Himalayas with the reality of
young children who are too poor to go
to free schools, who are beaten daily,
who do not have enough to eat, and
who are sold into the sex trade for only
a few dollars. This contrast made it
very difficult for me to do anything but
try to figure out a way to help some of
these children. But as a child-computer
interaction researcher and designer, I
have a fairly limited skill set. I know
how to design and evaluate new
technologies for children—and that’s
really all I can offer.
When an opportunity came up to
work with children living in poverty
who attended a non-profit school
( http://www.nepalhousesociety.org ),
I leapt. Any donations I might make
would be unlikely to significantly
benefit these children due to agency
overhead and political corruption.
Instead, I worked with a team from
Canada and Nepal to develop and
deploy a tablet-based brain-computer
interface (BCI) system to help these
children, who had suffered multiple
traumas, learn and practice the self-regulation of anxiety and attention.
The goal was to improve their ability to
self-regulate during school [ 2].
It was during my work in Nepal
that I had a head-on collision with
ethics. During the early months, I
asked myself almost daily if I was
doing any good in the world or if I
was just assuaging my Western guilt.
I’m a tenured professor at Simon
Fraser University, a well-respected
Five questions to ask when working with
→ How can we know we are
→ How can we work with those who need
help but are least able to give assent?
→ How do we find a balance between
rigor and ensuring our research
causes no harm?
→ How do we manage attachment to
the research team?
→ What will we leave behind?