Transforming Queer Health Technologies Through Community-Based Systems Design

Abstract

Technologists are often motivated to do good in the world, laying out grand visions for how to optimize systems, automate tedious tasks, and expand what is possible. However, these innovations can create or exacerbate inequities, foregoing the needs of marginalized people in favor of novelty for those who already enjoy certain advantages. This tradeoff between innovation and fairness, however, is a false dichotomy. Through this dissertation, I argue how technology designers can carefully consider the impacts on marginalized people and the harms that can occur when systems are poorly designed, built, and evaluated and that, in turn, this attention can actually drive innovation. To this end, this dissertation compiles together queerness, health, and computing to develop a framework for designing health systems that counters structural oppression. As I witness, a queer praxis expands the domains of health and computing by confronting their respective and overlapping histories of mistreatment of marginalized people, opening up new paths for co-development in research. My investigation to accomplish this consists of two parts. First and more broadly, I outline an approach to working with marginalized people in Human-Computer Interaction (HCI) research by identifying four inherent tensions that researchers must attend to—exploitation, membership, disclosure, and allyship. By discussing what makes each tension difficult as well as actions that researchers can take to mitigate harms, I underscore the value of working with marginalization in the face of complexity. I then apply these lessons of conducting HCI research with marginalized people into a specific case study of co-designing a health technology for and with trans and queer youth, known as Project Online Interactive Sex Education Tool (OISET). Here, I report on two studies that uncover crucial needs of this tool: first, high-level design needs related to inclusion and safety, and second, privacy and security concerns and requisite design-based mitigation strategies. By connecting these two sections across multiple chapters, I exemplify how HCI researchers can integrate intersectionally holistic conceptualizations, community-based participatory values, and systems-level thinking into their own approaches and research contexts. Grounded in this analysis, I build up to six commitments for HCI researchers invested in designing sociotechnical systems for health equity. With these commitments in mind, I illuminate a path forward and demonstrate that an equitable and liberatory future of technology development is not only possible but within our reach.