Textbook Beauty: Developing a Protocol for Selecting Photographs of Individuals with Rare Genetic Diseases in Medical Educational Material

This paper outlines the development of a protocol for selecting photographs to be used in the Positive Exposure project: Textbook Beauty. The protocol aims to establish a standardized method for evaluating medical imagery, ensuring that chosen images maintain medical education utility while aligning with the Positive Exposure mission to mitigate stigma and bias in the representation of individuals with any rare genetic disease (RGD). Current medical educational imagery has been shown to perpetuate stigma experienced by individuals with an RGD by perpetuating harmful biases held by healthcare providers. Researchers explored the current landscape of medical imagery, the lived experiences and perceptions of bias reported by individuals with RGDs, and existing approaches to objectively evaluating subjective media. Literature reviews were used to inform and guide the researchers’ protocol development. The final result was a novel scoring protocol evaluating four key criterion: Essential features, Associated features, Under-represented features, and Humanistic features. The researchers then sought preliminary feedback from genetics professionals via a short questionnaire. The protocol outlined may serve as a foundation for ongoing revision and validation, with the ultimate goal of guiding photograph selection for Textbook Beauty in a manner that promotes educational utility and humanistic representation.