Nicole Kuhn
American Indian and Alaska Native (AIAN) individuals, communities, and organizations are leveraging popular social media platforms to share relevant and timely health content. Human-computer interaction (HCI) social media research can provide insights about this content that supports AIAN communities with their health communication strategies. However, many serious ethical concerns exist within HCI social media research. These issues are further amplified when considering social media content created by members of diverse AIAN communities, as many Tribal nations have their own Tribal research review boards (TRRBs) that determine if and how research can be conducted with their community members. We advance the development of Indigenous research methodologies and ethics for HCI social media research by integrating insights gained through two Indigenous-led, multi-year research projects. Our first project provides a content analysis of the most prevalent themes we have identified across publicly available TRRBs’ online documentation: risks, benefits, informed consent, and data management. Our second project includes multiple collaborative studies with a regional Tribal health organization to provide content analyses of AIAN health information shared on two of the most popular social media platforms, Facebook and TikTok. Our latest study integrates insights from all projects to advance community-centered Indigenous research methodologies and ethics for HCI social media research. Through this work, we aim to increase the benefits and decrease the risks of digital health research for AIAN communities, while upholding Tribal sovereignty and operationalizing the CARE (collective benefit, authority to control, responsibility, ethics) principles.