First do no harm: developing an ethical process of consent and release for digital storytelling in healthcare
Keywords:Digital storytelling, healthcare, ethics, informed consent, respect, reflection
Opportunities to disseminate the stories of patients and those who care for them via the internet create new dilemmas with respect to ethical processes of consent and release. The possibility of utilising images as well as words further complicates this issue.
Balancing the need to protect the safety and security of those who share their stories with their own desire for their stories to be widely heard presents a complex blend of ethical issues.
The Patient Voices programme has been helping people create and share digital stories of healthcare since 2003. During that time, careful thought has been given to the development of a respectful process that both empowers and protects storytellers, affording time at every stage of the process to reflect and make informed decisions about consent, sharing and dissemination.
This paper describes how that process has been developed and explores the issues that it was designed to address.
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