The New South Wales Supreme Court in Sydney has ruled that a brain-damaged teenage girl with developmental delay must undergo compulsory genetic testing, against the wishes of her father (see The Australian).
This move is less draconian than it may sound, since it is intended to determine whether or not there is an underlying genetic cause for her disabilities. The girl’s father is seeking damages from the Children's Hospital at Westmead and the paediatrician involved with care of his daughter in the 1990s, claiming that her disabilities are the result of seizures that occurred during several weeks spent in hospital during infancy, prior to diagnosis of hypoglycaemia caused by congenital hyperinsulinism. The legal claim alleges that failure to diagnose the condition earlier was negligent and resulted in avoidable brain damage.
However, the Supreme Court judge supported an application made by defence lawyers for a small blood sample to be taken from the girl and analysed for other possible causes of developmental delay, such as genetic or chromosomal abnormalities, describing it as a ‘'legitimate litigious step’ (see Sydney Morning Herald).
Compulsory genetic testing – indeed any sort of diagnostic testing – of a minor with limited mental capacity, against the wishes of a parent or guardian, would under most circumstances be considered ethically unacceptable. If accurate diagnosis could make a significant difference to clinical management and outcome, there would be room for debate. In the case of a legal battle with millions of dollars potentially at stake, there is some justification for exhaustive clinical investigation. However, whether it will provide any useful evidence is less likely: congenital hyperinsulinism could most certainly have caused the girl's disabilities, but if other potential genetic causes are also identified, it is unlikely to be possible to demonstrate the relative contribution of each factor.