A pregnant woman in the UK has sued a hospital and mental facility for failing to inform her that she had, through her father, a high risk of suffering from Huntington’s disease. Huntington’s Disease is a hereditary condition causing damage to the brain cells, giving rise to disruption of movement, cognition and personality change and is incurable. A child of a parent with Huntington’s disease has a 50% chance of developing the condition.

The woman sued the health facilities for failing to inform her of her father’s diagnosis. She claimed that had she been informed of her genetic disposition, she would have terminated the pregnancy rather than run the risk that her child might be dependent on an ill single parent and might also inherit the disease.

A claim for wrongful birth is well established in UK and South African law. The claim is brought by parent(s) of a child who claim that they would have avoided conception or terminated the pregnancy had they been informed by the doctor of the risk of a serious genetic or congenital abnormality in the child.

Wrongful birth claims are usually brought simultaneously with wrongful life claims where the child seeks damages from the doctor for allowing the child to be born into a life of disability. Currently, the latter claims are not recognised in most common law jurisdictions because essentially, the question that the court will be called upon to answer is existential, and that, the courts have said, is a question that ‘goes so deeply to the heart of what it is to be human that it should not even be asked of the law’. In the present case, the issue did not come up because no claim was made on behalf of the child, who was too young to be tested for the genetic condition.

The main aspect of this case relates to the duty owed by a doctor to keep confidential the secrets of his or her patient. The claimant’s father had refused to give consent to the disclosure of his genetic condition.

The court reasoned that in the field of genetics, it is arguably fair, just and reasonable to impose on clinicians treating a patient with Huntington’s disease a duty of care to disclose the inherited condition to a child, and remitted the case for argument in the trial court. The confidentiality aspect of the judgment is discussed here.

In South Africa, wrongful birth claims have been brought in the context of congenital birth defects such as cerebral palsy and Down Syndrome. But these cases had no confidentiality factor. We are yet to see a case where a genetic predisposition has been alleged. The test is whether the negligent failure of the doctor in diagnosing and informing the parent(s) of the genetic or developmental abnormality in the foetus deprived them of the choice to terminate the pregnancy. A case like this is likely to succeed in a South African court.

The case is ABC v St George’s Health care NHS Foundation Trust.