Lay summary
In Aotearoa New Zealand, like many countries, genetic testing for adult-onset conditions is not performed in children. This rule rests on two ideas: that such testing offers no clinical benefit and that it breaches children’s future autonomy. It is supported by studies showing that adults value having a choice about genetic testing. However, the rule also stems from very specific Western philosophical traditions. Can and should it be altered to reflect te ao Māori? This question was recently raised by whānau in the context of genetic testing for CDH1 variants, which significantly increase risk of Hereditary Diffuse Gastric Cancer (HDGC), a potentially lethal condition that disproportionately affects Māori. This project will conduct a preliminary examination of positions, research, and experiences, build relationships, and identify knowledge gaps to design a full, te ao Māori-informed, investigation of the case for and against expanding HDGC and other genetic testing to children.