UK: Confidentiality And The Sharing Of Genetic Information

Last Updated: 12 February 2016
Article by Clyde & Co LLP

ABC v (1) St George's Healthcare NHS Trust (2) South West London and St George's Mental Health NHS Trust (3) Sussex Partnership NHS Foundation Trust

A recent decision by the Court has confirmed that it was not negligent for a Doctor to withhold information from a daughter about her father's genetic disorder in light of his refusal to allow the information to be shared.


In 2007 the Claimant's father ('F') shot and killed the Claimant's mother. He was convicted of manslaughter on the grounds of diminished responsibility and was sentenced to a Hospital Order under the Mental Health Act 1983. Whilst under detention he underwent a number of assessments and in 2009 he was diagnosed with Huntington's Disease. Huntington's is a very serious condition and is genetic in origin. If a parent has the disease, there is a 50% chance that his or her child will have it as well. On this basis the treating Hospital sought F's permission to inform his daughter, the Claimant, of his diagnosis so she could undergo testing herself. The Claimant was pregnant at the time of F's diagnosis and it was felt by the Trust that the likelihood of her having Huntingdon's and the potential for her child to have it also was an important factor for her to take into account.

The Trust discussed the disclosure with F in detail. F refused permission for his diagnosis to be shared with the Claimant and the Trust respected his decision.

The Claimant had a daughter in April 2010 and some months afterwards the Claimant was accidentally informed by one of F's doctors that he suffered from Huntingdon's. The Claimant then underwent tests and she was diagnosed as suffering from the condition in 2013. At this time it is too early to test the Claimant's daughter to determine whether she has Huntingdon's.


The Claimant brought a claim against the organisations caring for F on the basis that she should have been informed of her Father's diagnosis. She claimed that had she been told of his condition, she would have undergone the test herself and on the basis that she also had the condition, would have not gone ahead with her pregnancy. She claimed that the failure to inform her of F's diagnosis was negligent and breached her rights under Article 8 of the European Convention of Human Rights. The Claimant claimed that she had suffered psychiatric injury as a result and if her child did have Huntington's she would have to incur additional expense in caring for her.

The Claimant contended that the guidance of the Royal College of Physicians on sharing genetic information clearly stated that "confidentiality is not absolute" and in special circumstances a disclosure could be made where "the aversion of harm by the disclosure substantially outweighs the patient's claim to confidentiality". The Royal College guidance gave the specific example of a family member declining to inform relatives of a genetic risk as a circumstance where disclosure could be justified. The Claimant also pointed to the GMC guidance on Confidentiality which also recognises that confidentiality is not absolute where there may be a risk to others.

The Claimant argued that the Doctors were under a duty of care to share the information about her Father's diagnosis with her given its importance. The Defendants argued that the Claimant could not impose liability for an omission; for a failure to disclose information to the Claimant in these circumstances. The Defendants argued that if the Claimant succeeded this would subject healthcare professionals to conflicting duties: a Doctor could be sued by the subject of the information if they breached confidentiality, and sued by a third party if they refused to provide the information.

The Judge found that the interpretation of the duty of care put forward by the Claimant was "entirely novel" and held that to hold a Doctor negligent in these circumstances would be a radical departure from the current position. The Judge held that there was not sufficient evidence to demonstrate that a special relationship existed between the Defendants and the Claimant which would warrant a duty of care and accordingly the claim was struck out.

In relation to the Human Rights Act claim, the Claimant argued that the failure to disclose the information to her impacted upon her right to family life as enshrined by the ECHR. The Judge considered that there could not be a positive duty implicit in Article 8 to share the information and found that the claim failed on the same basis that the claim in negligence.


This interesting case confirms that healthcare professionals must respect a patient's confidentiality even where the disclosure of information may impact on another individual. Whilst the guidance acknowledges that there may be occasions where information can and should be shared with a third party, that it will be wholly dependent upon the factual circumstances. A doctor has a duty of care to their patient but as the Claimant was not a patient in this case, there was no duty to inform her of the diagnosis of her Father in light of his refusal to consent to her being informed.

Cases of this nature where disclosure of information can have a number of positive and negative outcomes are always very complex and must be approached with care. This case does not preclude a healthcare professional from sharing information with a third party where necessary and whilst this case does not make those decisions any easier, it does confirm that where information is not shared, there is no duty of care owed to that third party.

Confidentiality And The Sharing Of Genetic Information

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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