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Daughter wins right to sue father's doctors in confidentiality case

22 May 2017

By Jennifer Willows

Appeared in BioNews 901

A UK woman whose father has Huntington's disease has won the right to sue his doctors for negligence for failing to tell her of the diagnosis.

The UK Court of Appeal last week overturned a 2015 decision by the High Court which had ruled the case had little prospect of success and therefore should not proceed. The latest judgment means the case is arguable - balancing the right to doctor-patient confidentiality with the obligation to prevent harm to others  - and can go to trial.

Huntington’s disease (HD) is caused by a mutation in a single gene, and the child of an affected person has a 50 percent chance of inheriting the incurable illness. Symptoms usually start between the ages of 35-55 with significant loss of function, and the condition is ultimately fatal.

The father in this case has been held in a secure hospital since 2007 following his conviction for manslaughter after killing his wife. In early 2009, his doctors suspected that he had Huntington's disease and the diagnosis was confirmed later that year. The father was adamant that his three daughters should not be told because they ‘might get upset, kill themselves, or have an abortion’.

One of man's daughters subsequently became pregnant and gave birth to a baby girl in 2010. A few months later, one of the father's doctors accidentally revealed the HD diagnosis to her. She has subsequently been tested and carries the HD gene; her child is too young to be tested.

The woman – whose identity has not been revealed – claims that she would have been tested sooner had she known, and terminated her pregnancy in the light of a positive result. She knew when pregnant that she would be a single mother, and would not have wanted to have a child who will be orphaned or dependent on a severely ill adult.

When the case was originally brought to the High Court, it was 'struck out' before receiving a full hearing, with judge Mr Justice Nichol concluding that the doctors did not owe a duty of care to the woman because she was not their patient. He was also concerned that if clinicians have a duty to disclose such information it would undermine doctor-patient confidentiality and public trust in the medical profession.

In the appeal, the UK General Medical Council's 2009 guidance on doctor-patient confidentiality was central to the decision. It states that a doctor should disclose information 'if a patient's refusal to consent to disclosure leaves others exposed to a risk so serious that it outweighs the patient's and the public interest in maintaining confidentiality'.

Lord Justice Irwin ruled that this could mean that a duty of care existed: 'If the clinician conducts the requisite balancing exercise, and concludes that it falls in favour of disclosure then a professional obligation arises.' 

The case will now return to the High Court for a full trial.

SOURCES & REFERENCES
UK High Court of Justice (Queen's Bench) | 19 May 2015
 
UK High Court of Justice (Civil Division) | 16 May 2017
 
Reynolds Porter Chamberlain LLP | 17 May 2017
 

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

10 July 2017 - by Victoria Chico 
In ABC v St Georges NHS Trust, the daughter of a man with Huntington's disease sued the UK hospital caring for her father, claiming that they had a duty of care to share the father's diagnosis with her, even against his wishes...
26 June 2017 - by Meghna Kataria 
Eliminating the faulty protein that causes Huntingdon's disease goes some way to reversing disease progression in mice, a study has found...
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Scientists have identified the first promising biomarker for Huntington's disease (HD) that could be harnessed in a simple blood test to predict disease onset and progression...

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One of the legally and ethically problematic issues regularly debated in the context of biobanks and tissue repositories is that of its potential for forensic use. When Anna Lindh (the Swedish foreign minister) was murdered in 2003, her killer was subsequently identified by way of matching DNA traces found at the crime scene with data contained on the killer's Guthrie card...
23 February 2015 - by Sean Byrne 
Do you really want to know? This was the question presented in the award-winning documentary of the same title, and to the panel in a discussion that followed its recent screening by Genetic Alliance UK...
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Advances in genetic and genomic research mean that the identification of a genetic condition or a genetic susceptibility to disease is increasingly becoming a routine part of health care. Many more highly predictive genetic tests are available today than there were just a few years ago and for some conditions (for example, certain types of cancer or heart disease), there are proven surveillance or prevention strategies which can reduce morbidity or mortality...

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