Decision-Making Aid

decide
Building Biosociality through Visualizations of Genome-Wide Sequencing Risk for an Online Patient Decision-Making Aid

 Illustrated patient decision making aid funded by the Max Planck Institute for the History of Science

Concept, Storyboard: Alexandra Hamann
Illustrator: Sophia Martineck
Authors: Ariane Hanemaayer, Adam Christianson

How can families be supported in deciding whether to have their sick child undergo genetic testing?


For parents whose children have severe health issues, a genetic test is often the last hope for obtaining a diagnosis or finding a therapy. In most cases, they have undergone a long diagnostic odyssey before considering this option.
There are many factors to take into account.


To help families prepare for the counseling session with a genetic counselor, so-called patient decision aids are provided. In addition to medical and technical information, communicating the social and psychological implications of such a decision is essential.


Therefore, we developed a patient decision aid that highlights the potential connections between the affected individual (and their relatives) and others around the world who share similar experiences along the diagnostic odyssey.


We begin by providing an introduction to the method of genome-wide sequencing. We then draw on the concept of biosociality to reconsider how patients might feel empowered and connected through the knowledge that can be gained from genetic testing.



Building Biosociality through Visualizations of Genome-Wide Sequencing Risk for an Online Patient Decision-Making Aid (DECIDE) 

in: Biomedical Visions
Epistemology, Medicine, and Art Practice
Edited by Elizabeth Hughes and Alfred Freeborn

© 2025 Hatje Cantz Verlag, Berlin, and authors, p. 259-303

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