Crazy Like Us: Design for Vulnerable Populations

Abstract

Most ethics boards classify children as a vulnerable population -- all children. 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 and 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 research. Working with and for children, which is the cornerstone of the child-computer interaction community, raises a number of ethical challenges. First, we must present our research to children in ways they can understand. Because if we don't do this then we exclude the children who could benefit the most from the work we do, because they cannot easily give assent or because they may be difficult to access or work with. This raises an even more important issue. 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 benefiting from our research? Third, what happens after our research is over? What legacy do we leave behind when our research is complete?