ELSIcon2024: Rethinking the Rule Against Testing Children for Adult-Onset Conditions: A New Zealand Case Study

ELSIcon2024 • Paper • June 10, 2024 

Authors:

Speaker: Josephine Johnston, LLB, MBHL (she/her/hers) – University of Otago and The Hastings Center

In New Zealand, like many countries, genetic testing for adult-onset conditions is not performed in children. This rule rests on the "right to an open future’’--the idea that testing children for conditions that will not affect them until adulthood inappropriately breaches their autonomy. It is supported by studies showing that people value having a choice about whether and when to be tested for various genetic conditions. However, the rule also stems from very specific Western philosophical traditions and laws. Can and should it be altered to reflect more collective understandings of self-determination and benefit, or indeed of genes themselves? This question has recently been raised by Māori whānau (families) and New Zealand academics in the context of genetic testing for mutations in CDH1 and CTNNA1 genes, which significantly increase risk of Hereditary Diffuse Gastric Cancer (HDGC). Because HDGC has onset in early adulthood, testing is currently restricted to those with decision-making capacity, in line with the Human Genetics Society of Australasia’s 2020 Position Statement on Predictive and Presymptomatic Genetic Testing in Adults and Children. Yet some whānau wish to test their young children, arguing that the position statement was not developed with input from Māori and does not reflect te ao Māori (Māori worldview) or Māori ontology of time. In this presentation, with genetic testing for HDGC in New Zealand as our case study, we consider arguments for moving away from the rule against genetic testing of children for adult-onset conditions in favor of a more familial approach to genetics.

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