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Daughter loses Huntington's confidentiality case

2 March 2020
Appeared in BioNews 1037

A UK woman who sued her father's doctors because they did not inform her of her risk of Huntington's disease (HD) has lost her case. 

The woman, known only as ABC, brought the case after discovering that her father (who is in a secure hospital after killing ABC's mother) was diagnosed with HD in 2009 but refused to allow doctors to tell his adult daughters.

ABC had a daughter in 2010 and subsequently found out about her father's diagnosis. She has since taken a genetic test and carries the HD gene variant, meaning she will develop the disease. Her child has a 50 percent chance of also being affected. ABC claimed that she would have been tested sooner had she known, and would have terminated her pregnancy upon receiving a positive result to avoid her child being orphaned or dependent on a severely ill adult.

Mrs Justice Yip, delivering her verdict in the High Court of England and Wales agreed that the doctors 'owed the claimant a duty of care to balance her interest in being informed of her genetic risk against her father's interest and the public interest in maintaining confidentiality. The scope of that duty extended to conducting a balancing exercise and to acting in accordance with its outcome.'

However she found that the doctors had conducted the balancing exercise as required, and so had not breached their duty of care to ABC: 'The decision not to disclose was supported by a responsible body of medical opinion and was a matter of judgment open to the second defendant after balancing the competing interests.'

The decision may have wide-ranging implications for clinicians, especially as genetic and genomic testing is becoming more common. When the case was originally brought to the High Court in 2015, Mr Justice Nichol expressed concern that if clinicians have a duty to disclose such information it would undermine doctor-patient confidentiality and public trust in the medical profession (see BioNews 901). 

However Justice Yip emphasised that the responsibility is in keeping with existing professional guidance. The General Medical Council (GMC)'s 2017 guidance tells doctors that 'If a patient refuses consent to disclosure, you will need to balance your duty to make the care of your patient your first concern against your duty to help protect the other person from serious harm.'

'The duty I have found is not a free-standing duty of disclosure nor is it a broad duty of care owed to all relatives in respect of genetic information. The legal duty recognises and runs parallel to an established professional duty and is to be exercised following the guidance of the GMC and other specialist medical bodies' Justice Yip said.

ABC v St George's Healthcare Trust and Others [2020] EWHC 455 (QB)
England and Wales High Court (Queen's Bench Division) |  28 February 2020
Huntington's disease: Woman with gene fails in bid to sue NHS
BBC News |  28 February 2020
Huntington's ruling on doctors' duty to tell patient's family
Guardian |  1 March 2020
Woman not told father had fatal disease loses fight for NHS payout
Telegraph |  28 February 2020
2 March 2020 - by Professor Anneke Lucassen 
A long-awaited decision in the case of ABC v St George's and others was made public last week...
3 December 2018 - by Eleanor Mackle 
A lawsuit brought against a London hospital by a woman whose father's doctors failed to inform her of her risk of Huntington's disease could result in major changes to the laws surrounding patient confidentiality...
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...
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...
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