Page URL:

No duty to inform non-patients of genetic test results

25 April 2016
Appeared in BioNews 848

The UK's High Court has struck out a claim in negligence brought by the family of two children affected by a genetic condition against a hospital for failing to diagnose the disorder when testing their second cousin three years previously.

Connor and Callum Smith were born with pre-symptomatic adrenoleukodystrophy (ALD), a genetic condition caused by a fault the ABCD1 gene that affects the white matter of the brain. The condition can lead to seizures and physical and mental decline that can result in death or permanent disability.

At the age of 6, Callum was admitted to hospital with a high temperature, vomiting and loss of vision, and was tested and diagnosed with ALD. By this time Callum's condition had become too far advanced for a treatment of haematopoietic stem cell transplantation to be of benefit. His condition deteriorated and he died in 2012 aged 13.

Connor, who at the time was not showing any signs of ALD, was also tested and diagnosed with the condition. However he was able to receive a bone marrow transplantation and other treatment so that his health was maintained, although the court noted that he shows signs of significant intellectual and neuropsychological problems.

The mother, acting on behalf of Callum and Connor, sought to sue the University Hospitals of Leicester NHS Trust for failing to perform a genetic test on the children's second cousin, Neil Caven, in 2003, as had been requested by a doctor at that time.

Caven, who is affected by adrenomyeloneuropathy (AMN), a version of ALD, was seen by a neurologist at Leicester Royal Infirmary who requested testing of very long chain fatty acids. This was not done at the time and Craven was only tested in 2006 after Callum and Connor themselves were diagnosed with ALD. The family claim that had ALD been diagnosed earlier, it would have improved the health outcome for both Callum and Connor.

Striking out the claim, Judge McKenna said that the doctors did not owe Callum or Connor a duty of care, explaining that there was insufficient proximity between the parties, and that it would not be 'fair, just and reasonable' to impose a duty of care.

Counsel for the family sought to argue that there were policy factors in favour of finding a duty 'in circumstances where the defendant had a clinical genetics service that investigates pedigrees in order to identify relatives at risk'. Furthermore he said it was arguable that the hospital had assumed a responsibility to Caven's relatives in the course of providing genetic services.

Judge McKenna was not convinced, however, and held that the case had no real prospect of succeeding. Discussing the case of ABC, which is currently listed for an appeal hearing next year, and other cases that denied a duty of care between defendants and third parties, the judge formed the view that a hospital does not owe a duty of care to someone who is not a patient and that a duty could not arise in this case.

'To extend the duty of care to a patient's second cousins (even though on the particular facts of the case there was the potential for them to be affected by an omission in the treatment of that patient) is to go well beyond the existing law and fails therefore the test of what is "fair just and reasonable"', he said.

The claimants sought to distinguish ABC on the grounds that in that case a duty of confidence arose as the patient had refused to give permission for a positive test result for Huntington's disease to be shared with his daughter, whereas in this case there was no suggestion that Caven would not have shared his results.

However Judge McKenna said that the decision in ABC was not dependent on the issue of confidentiality, but more generally was grounded in the principle that a third party cannot bring a claim in respect of an omission in the treatment of another.

Down the Rabbit Hole of Genetic Testing
UK Human Rights Blogt |  19 April 2016
Smith & Anor v University of Leicester NHS Trust [2016] EWHC 817 |  15 April 2016
9 October 2017 - by Charlotte Spicer 
A new gene therapy has halted the progression of a fatal degenerative brain disease in a small study of affected boys...
22 May 2017 - by Jen Willows 
A woman whose father has Huntington’s disease has won the right to sue his doctors for negligence, for failing to tell her...
13 May 2013 - by Cait McDonagh 
The parents of a child born with a rare blood clotting disorder have lost their legal battle against an IVF doctor for wrongful birth after he failed to warn them of the risks of passing on the hereditary condition...
to add a Comment.

By posting a comment you agree to abide by the BioNews terms and conditions

Syndicate this story - click here to enquire about using this story.