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Canadian Journal of Law and Technology

Keywords

medicalized child media, MCM, medicalized child media fundraising, medicalized child media advertising, legal risks of medicalized child media

Abstract

When it comes to complex medical care for children, even in a country like Canada with many publicly funded healthcare services, much of the necessary research and holistic support for children and families is financed through private donations. Fundraising campaigns for children’s hospitals and services are common, often featuring movie stars, professional athletes, and many child patients. A range of important charitable activities, providing comfort, services, and necessities such as food and accommodation to children and families, are carried out through fundraising and donations. Fundraising for children’s services is a multibillion-dollar global undertaking. What’s more, it is largely dependent on media (photographs, videos, etc.) portraying medicalized children, which we refer to as ‘‘medicalized child media” or MCM.

Our terminology, medicalized child media, centers on the purpose for which a child becomes the subject of media like photographs and videos. Children with any medical condition can be portrayed in the media in ways that are not medicalized. For instance, an annual school photograph of a child with alopecia from cancer treatment is not medicalized child media. However, if that same child is also featured in a social media fundraising campaign for a cancer organization, we would label the media associated with that campaign as MCM. MCM arises when a child is featured due to their medical or medically related experience. This portrayal of a child as medicalized is significant to the decision by a child or their guardian to participate in such media and can have ongoing implications for their health privacy, and their decision or ability to manage their ongoing control over that information into adulthood.

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There are potential lifelong ramifications for a child featured in MCM, particularly now in the digital age. Online content is generated and consumed in previously unimaginable quantities, with unprecedented access, permanence, and poorly understood or impossible-to-predict long-term ramifications. The advent of widely accessible artificial intelligence (AI) technologies has exponentially accelerated the risks. Large-scale image indexing and ever-advancing facial recognition technologies facilitate the connection of an individual’s media, social connections, and other personal information across the internet. Given the pace at which new data collection and analysis tools have become accessible to the public, the latest implications of MCM have not been fully explored, and the legal frameworks to protect individual and collective rights have not yet adapted to this rapidly evolving context. This is especially true for children whose privacy protections are already scant. While Canadian legislators and policymakers have recognized the urgency to enhance privacy and other online rights for children, legal protections have been slow to materialize.

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In this paper, we explore some of the challenges the use of MCM poses for children’s privacy. While there are many important reasons why a child and their family might choose to be featured in MCM, the technologies that allow for mass-scraping and processing of images from the internet present new and evercomplicated privacy concerns for the featured child and their guardians and families who might provide proxy consent. Another paper explores alternatives to medicalized media, including creating content with drawings or paid actors. Still, it concludes that it is often appropriate and meaningful for children and adults with lived experience to be featured in the images that convey their story and experience, whether for fundraising, education, or training purposes.10 Nevertheless, old challenges persist, and new challenges continue to emerge when children are represented online in association with, and often solely because of, their medical experiences.

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