An Ethics Framework for Digital Storytelling as a Multi-Purposed Public Health Method

This presentation explores ethical considerations related to the use of participatory visual and digital methods for multi-purposed public health work, including as a technique for data collection, advocacy, and strategic communications. I explore ethics through the lends of digital storytelling, using the Ford Foundation-funded Hear Our Stories: Diasporic Youth for Sexual Rights and Justice project and the NIH-funded A Culture-Centered Narrative Approach to Health Promotion project as case studies for presentation and comparison. The Hear Our Stories project uses digital storytelling to reveal how diasporic youth experience and negotiate sexual health disparities. We prioritize uprooted young parenting Latinas, whose material conditions and cultural worlds have placed them in tenuous positions, both socially constructed and experientially embodied. Existing programs and policies focused on these women fail to use relevant local knowledge and rarely involve them in messaging efforts. We aim to transform assumptions about young parenting Latinas through digital storytelling to recalibrate the conversation on young motherhood and sexuality, health, and rights across generations. Digital storytelling workshops have served as a venue for training 8 new scholars in cutting- edge sensory ethnographic methods and for producing 31 digital stories as transformative data. We are also working with a cadre of 10 young parenting Latinas to develop their capacity as sexual and reproductive rights advocates as they engage in project-sponsored trainings, workshops, meetings, and conferences. Repurposed into strategic communications materials, the stories are intended to trigger multi-level conversations on sexuality, health, rights and justice issues. The Culture-Centered Narrative Approach project uses a narrative approach, digital storytelling, that will result in culturally specific data to be used in the future development of culturally centered sexual health interventions, and increased levels in self-esteem and clarity of personal sexual values, increases in sexual decision-making and communication skills, and an increase in perceived choices in one’s actions among participants. It is proposed that the core elements of the intervention (i.e., the digital storytelling process) will be generalizable to other cultural groups, while other important features (i.e., the digital stories themselves) will be adaptable, thereby increasing the utilization of findings. For this presentation, I begin by briefly describing the digital storytelling process and its multiple applications. Next, I explore six common challenges: Fuzzy Boundaries; Recruitment and Consent to Participate; Power of Shaping; Representation and Harm; Confidentiality; and Release of Materials related to multi-purposed work using this method. I discuss their complexities and offer some considerations for ethical practice. I hope this presentation serves as a starting point for expanded dialogue about the need for high standards of integrity and a “situated practice of ethics” wherein researchers and practitioners reflexively consider ethical decision making part of the ongoing work of public health.