Interactions - November/December 2017

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/ newsroom/mercer-2017-retirement- quality-of-living-rankings.html). I 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