ABC's father shot and killed her mother in 2007 and was detained under the Mental Health Act. During 2009, he was diagnosed with Huntingdon's disease (HD), an incurable, hereditary brain disease, and was being treated in a forensic psychiatric unit by clinicians working at three NHS trusts, including St George's.
Despite knowing that ABC was pregnant, the various teams of doctors involved in her father's care failed to inform her about her own risk of inheriting the condition before she gave birth.
When she did find out, after her daughter was born, ABC was tested and discovered that she had the same abnormal Huntington's gene as her father, meaning her daughter also has a 50 per cent chance of inheriting the incurable degenerative disease.
ABC maintains that she would never have given birth had she known she had inherited her father's condition. She gave evidence at trial that as a single woman with no parental or partner support, and in circumstances where she had discovered that she had the same disease that probably caused her father to kill her mother, and which her daughter also had a 50% chance of inheriting, she would have chosen to terminate her pregnancy.
All along, her father had refused consent to allow doctors to tell his daughters about his condition and by so refusing he deprived her of her right to exercise her own choice.
Guidelines for clinicians facing the issue of withheld consent clearly require them to balance the interests of an at-risk relative being told of genetic information that might affect their health, against a patient's interests in wanting to keep that information to himself.
In this case, a clinical geneticist had also expressly provided the forensic psychiatric team with alternative strategies to allow doctors to give ABC non-confidential information that would have helped her understand there may be a genetic condition for which she might want to be tested, without expressly breaching her father's confidentiality.
Our case centres on two arguments; first, that the doctors had a legal and professional duty to balance her interests in being told, against her father's interests in wanting to keep the information to himself. Had they performed that exercise properly, they would have recognised the significant harm that might be caused to her by depriving her of a choice in relation to her pregnancy and disclosed the information against his wishes.
Secondly, that the clinicians focused solely on trying to persuade XX to give consent. When he refused to do so, there is no evidence that they attempted any of the additional steps expressly suggested to them by the clinical genetics team. They therefore breached their duty of care to her, the result of which caused her serious harm.
The defence argues that there was no therapeutic benefit in revealing the disease to ABC since there is currently no treatment. They argue that depriving a woman a right to choose whether to continue with her pregnancy does not amount to a serious harm.
Their witness agreed in court yesterday that at no point did they consider whether a pregnant woman with the faulty gene might wish to terminate the pregnancy, irrespective of the genetic status of her foetus, nor whether depriving that parent of the right to terminate the pregnancy might amount to harm.
The trial continues in the High Court. In 2017, Jonathan won an appeal in the Court of Appeal against a previous strike out of the case that allowed the current trial to proceed.
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