Mr Joey Mackle1, Ms Josephine Johnston1
1University Of Otago, New Zealand
Biography:
Joey Mackle has a BA in Philosophy and is currently completing his third year of medical school at the University of Otago. Last summer, Joey was awarded a Health Research Council of New Zealand Ethics Summer Studentship to study age restrictions on CDH1 genetics testing.
Josephine Johnston is Associate Professor in University of Otago’s Bioethics Centre and Senior Research Scholar at The Hastings Center (USA). She works on the ethical, legal, and policy implications of science and medicine, focusing on human reproduction and genetics. Josephine is co-chair of the Health Research Council of New Zealand’s Ethics Committee.
Abstract:
In New Zealand, like many countries, genetic testing for adult-onset conditions is generally not performed in children. This position is usually justified by pointing to children’s autonomy-based “right to an open future”, which in turn is supported by studies showing that people value having a choice about whether and when to be tested for various genetic conditions. However, it also stems from very specific Western philosophical traditions and law. 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 position against genetic testing of children for adult-onset conditions in favor of a more familial approach to genetics.