摘要：This article explores ethical considerations related to participatory visual and digital methods for public health research and practice, through the lens of an approach known as “digital storytelling.” We begin by briefly describing the digital storytelling process and its applications to public health research and practice. Next, we explore 6 common challenges: fuzzy boundaries, recruitment and consent to participate, power of shaping, representation and harm, confidentiality, and release of materials. We discuss their complexities and offer some considerations for ethical practice. We hope this article serves as a catalyst 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 as part of the ongoing work of public health. Emergent digital methods are changing the field of public health and opening new possibilities for collaborative approaches. These methods encourage repositioning participants as coproducers of knowledge who partner “in the definition of problems, formulation of theories, and the application of solutions.” 1 (p253) The simplification and affordability of technology has led to a rapid and diverse expansion of participatory video strategies. 2–4 In the early 1990s, the nonprofit Center for Digital Storytelling (CDS; http://www.storycenter.org ) codified a process to create compelling 3-to-5-minute short films that synthesize still images, video, voice recordings, music or sound, and text. 5 Digital stories privilege participant subjectivities: participants construct narratives, choose images and music or sound they feel best represents their experiences, and are guided through hands-on computer editing tutorials. The method is similar to Photovoice 6,7 as both methods are visual and participants are central to the production of knowledge. However, as it is described in the literature the Photovoice approach codifies an explicit action component, 8 whereas digital storytelling may not. However, we readily acknowledge exceptions as not all Photovoice projects contain action components, 9 although many digital storytelling projects do. 10 Digital storytelling has multiple aims. Stories can be used to: empower participants through personal reflection, growth, and the development of new literacies 11–13 ; educate and raise awareness among viewing audiences about issues presented in the stories 14,15 ; inform public policy, advocacy, and movement building 16 ; and provide visual, narrative, and multisensory data to support public health research and evaluation efforts. 17,18 Increasingly, digital storytelling is used in public health community-based participatory research and practice. Analysis of 250 digital stories produced with Northwest Alaska Native youths explores identity construction highlighting “sites of achievement” in young peoples’ lives. 19 These findings can be used to inform the development of assets-based interventions that more closely align with local community values. 20 Digital storytelling has also been used as a mechanism for youth empowerment in the context of diabetes prevention 21 and as part of a participatory food security policy development effort. 22 In another study, 23,24 child participants showed increases in sustained asthma knowledge, as well as improvements in attitude scores after watching a composite digital story and writing their own. At the other end of the life spectrum, positive changes were observed with early stage dementia participants, including increased confidence, connection, sense of purpose, and improved speech. 25 Although digital storytelling has the potential to contribute to a participatory dimension of public health research and practice, these innovative approaches open up space for new ethical issues to emerge. 26–28 Those adopting a principle-based approach, 29 or an overly legalistic framework that focuses merely on risk mitigation, may not be adequately prepared to reflect on this new terrain. Drawing on the work of Clark et al., we advocate for an approach in which ethical decisions are made on the basis of care, compassion and a desire to act in ways that benefit the individual or group who are the focus of the research…[where] ethical practice is appraised in the context of a particular case. 26 (p82) In this article, we follow the life course of several digital storytelling projects and highlight moments of ethical debate and tension. We begin by briefly describing the digital storytelling process, noting ways the approach has been applied in the context of public health research and practice. Next, we explore common situations, discuss the issues or complexities they create, and offer some considerations for ethical practice (summarized in Table 1 ). As we explore these situations through the lens of digital storytelling, researchers and practitioners using a variety of participatory visual and digital methods will benefit from a deeper consideration of the issues reviewed. TABLE 1— Summary of Situated Ethical Issues When Using Participatory Visual and Digital Methods Challenges Situation Issues Considerations for Ethical Digital Storytelling Practice Fuzzy boundaries DST falls at the nexus of public health practice, research, and advocacy. Confusion between where priorities lie (research vs practice) can lead to very different implementation approaches. All partners should be in agreement about specific goals, objectives, policies, and procedures. Recruitment and consent to participate Sponsors want to recruit diverse participants to share their stories. There is a fine balance between protecting individuals who are in the midst of trauma from further harm and patronizing potential participants through exclusion. Critically engage with potential participants about the realistic benefits and potential risks of participation. Provide cultural safety and supports (e.g., counselors or elders). Consent to participate is sometimes indirect: a story may feature people (voice, images, names) other than its author. Those featured in the digital story may be unaware of or upset about their inclusion. Optimally, oral or written consent is received from all of those featured in a story. Power of shaping Storytellers are encouraged to tell their own personal stories; however sometimes tensions arise between emphasizing processes versus products. Facilitators may help “shape” the narrative to produce stories that will resonate with audiences, inadvertently imposing their own agendas. Sharing power often means losing control over messaging. Reflexive attention to issues of power and a sense of cultural humility are key to excellent facilitation. Storyteller’s well-being and autonomy of voice should be at the center of a project. Representation and harm Participants sometimes tell stories that make us uncomfortable or expose themselves to harm through the process. Digital stories can misrepresent communities or reify stereotypes. Exposing illegal or illicit activity might endanger storytellers or participants. Storytellers’ well-being should be at the center of a project. Supports should be in place. Guidelines should be established and implemented for risk management and harm reduction. Facilitators can engage in critical dialogue with storytellers or audiences to challenge messages. Confidentiality Confidentiality may not always be possible or appropriate. Stories are sometimes so distinct that it is impossible to guarantee confidentiality. Often participants want to be credited by name for their contributions. Wherever possible, storytellers should be credited for their work by name (or chosen pseudonym) and maintain ownership over their stories. Release of materials Consent to participate in a digital storytelling workshop is not the same thing as release of materials: giving permission for your story to be shared in a variety of manners. Release of materials needs to be negotiated on an ongoing basis. Some stories reveal very personal issues (e.g., HIV status, a history of violence) that can make participants vulnerable to stigma and discrimination. Storytellers might want to change their stories or to change their minds about dissemination over time. Workshops should include a session on the ethics of videography, which considers the power of images and the spoken voice. Where, why, how and by whom stories are released needs to be negotiated. Options range from publicly posting stories online, to sharing media files only for the purposes of education, research, and advocacy in closed workshop forums, to a decision not to share them at all. All options need to be discussed, and agreed upon on a case-by-case basis. Release of materials ought to be an iterative and ongoing process. Open in a separate window Note . DST = digital storytelling.
