Exploring the Future of Informed Consent: Applying a Service Design Approach

• DOI: 10.1145/3637330
• Publication Date: 2024-04-29T14:05:31Z
• Authors: Brian James McInnis; Ramona Pindus; Daniah Kareem; Savannah Gamboa; Camille Nebeker
• Keywords: 03 medical and health sciences; 0302 clinical medicine

Informed consent is a cornerstone of ethical human subject research. This practice demonstrates the ethical principle of "respect for persons." Our study was designed to imagine an informed consent future, specifically in a digital health context in which informed consent processes are mediated by sociotechnical systems. Design speed-dating workshops were conducted to explore dimensions of the consent communication design space, including social media, interactive quizzes, chat-bots, annotation tools, and virtual learning sessions. To explore both the user experience and how futuristic consent processes might be facilitated, the workshops involved people eligible to participate in digital health research (N=21) and service providers (N=20), including researchers and IRB members. Our findings offer five principles to improve digital informed consent processes: be concise, promote transparency, value time and effort, cultivate trust, and navigate platform risks.