Judge Refuses to Order Disabled Boy and Parents to Undergo Genetic Testing

Anyone who claims damages for alleged clinical negligence should understand that they may be required to undergo medical investigations. As a guideline High Court ruling showed, however, that does not mean they have to submit to tests that may have limited utility and that they view as intrusive.

The case concerned a disabled boy who was alleged to have suffered a brain injury due to hypoglycaemia – low blood sugar levels – around the time of his birth. After proceedings were launched on his behalf, an NHS trust made limited admissions of breach of duty. However, it argued that the true cause of his injury might be an underlying genetic condition for which it bore no responsibility.

With that possibility in mind, the trust sought a court order requiring the boy and both his parents to provide blood samples for the purpose of genetic testing. The parents objected to the tests, which were proposed to include whole genome sequencing. They asserted, amongst other things, that their child had a fear of needles and was likely to be deeply distressed by having a blood sample taken.

Ruling on the matter, the Court accepted that the invasiveness of a blood test is low. However, the implications of the tests that the blood would undergo were potentially serious. Sequencing the whole genome might bring to light mutations indicating severe health consequences, including a predisposition to cancer or other disorders, that were wholly irrelevant to the issues in the case.

Dismissing the trust's application, the Court noted that the proposed tests would not look for any specific genes or conditions but for any abnormalities that might have a bearing on the case. Although the parents would be provided with counselling before giving their samples, the results of the tests could have a profound and significantly adverse impact on the way they lived their lives.

The trust asserted that there was a 20-25 per cent chance of the tests revealing a genetic cause of the boy's condition. However, that remained a mere possibility and the trust did not contend that his symptoms indicated any particular genetic cause. Given their potential negative impact on him and his parents, the balance came down against ordering them to undergo the proposed tests.