Huntington’s Disease


Doctor/patient confidentiality in genetic disease case

29 February 2020 by

ABC v St George’s Healthcare Trust and others [2020] EWHC 455 (QB)

The High Court has ruled that the health authorities owed a duty of care to the daughter of their patient who suffered from the hereditary neurodegenerative order Huntington’s Chorea, to inform her about his condition. But in the circumstances, Yip J concluded that the duty was not breached and that causation had not been established.

The facts of this case are set out in our previous post about the interlocutory proceedings before Nicol J. It will be recalled that the father had killed the claimant’s mother and was detained in a psychiatric hospital at the time of these events.

The outcome of the hearing on the merits has been awaited with anticipation because the finding of an obligation on a doctor to inform a third party may undermine the doctor-patient confidentiality rule, and this in turn would have a significant impact on the health services, particularly as genetic medicine increases the number of diagnoses that affect not just the individual patients but their relatives as well.

The issues before the Court

Now that the full trial of the merits of this case has been held, we have a more nuanced picture of the legal duties and defences. For a start, there were a number of defendants, not just the father’s clinician, but the medical team that made up the family therapy group that treated both claimant and her father. Furthermore evidence has come to light about the claimant’s attitude to the dilemma that she faced which has had implications for the decision on causation.

But first, let’s look at the issues that Yip J had to determine in this important case involving the implications for medical confidentiality in the context of hereditary disease.

i) Did the defendants (or any of them) owe a relevant duty of care to the claimant?

ii) If so, what was the nature and scope of that duty?

iii) Did any duty that existed, require that the claimant be given sufficient information for her to be aware of the genetic risk at a stage that would have allowed for her to undergo genetic testing and termination of her pregnancy?

iv) If a duty of care was owed, did the defendants (or any of them) breach that duty by failing to give her information about the risk that she might have a genetic condition while it was open to her to opt to terminate her pregnancy?

v) If there was a breach of duty, did it cause the continuation of the claimant’s pregnancy when it would otherwise have been terminated? (This involves consideration of whether the claimant would in fact have had the opportunity to undergo genetic testing and a termination in time but for the breach, and whether she would have chosen to do so.)


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Will genetically-informed medicine upend medical confidentiality?

17 May 2017 by

ABC v St George’s Healthcare NHS Trust and Others [2017] EWCA Civ 336 – read judgment

All the advocates in this case are from 1 Crown Office Row. Elizabeth-Anne Gumbel QC, Henry Witcomb QC and Jim Duffy for the Appellant, and Philip Havers QC and Hannah Noyce for the Respondents. None of them were involved in the writing of this post.

In a fascinating twist to the drama of futuristic diagnosis, the Court of Appeal has allowed an argument that doctors treating a Huntington’s patient should have imparted information about his diagnosis to his pregnant daughter to go to trial.

The background to this case is outlined in my earlier post on Nicol J’s ruling in the court below. A patient with an inherited fatal disease asked his doctors not to disclose information to his daughter. The daughter came upon this information accidentally, shortly after the birth of her child, and found, after a genetic test, that she suffered from this condition as well, which has a 50% chance of appearing in the next generation. Had she known this, she would have sought a termination of the pregnancy. She claimed that the doctors were liable to her in damages for the direct effect on her health and welfare.

A claim for “wrongful birth” is well established in law; no claim was made on behalf of the child, who was too young to be tested for the condition. The twist is the duty of secrecy between doctor and patient, which has held very well for the past two centuries. Short of confessions pertaining to homicide or information regarding contagious diseases, the dialogue behind the consulting door should end there.

The problem is that the typical medical relationship only pertains to the pathology of the individual patient. Now that tests are available that make every single one of us a walking diagnosis not only for our own offspring but those of our siblings and their offspring, the one-to-one scenario collapses, along with the limited class of people to whom a doctor owes a duty of care. The pregnant daughter who came across the information about her father’s condition was not the defendant doctor’s patient. In pre-genetic days, that meant there was no duty of care relationship between her father’s doctors and her. But the certainty of hereditability brings her into that circle.
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No duty of care to disclose to pregnant daughter father’s genetic disease – High Court

20 May 2015 by

12280487228o6zg0ABC v St George’s Healthcare NHS Trust and others [2015] EWHC 139, Nicol J – read judgment

Philip Havers QC  and Hannah Noyce, and Elizabeth-Anne Gumbel Q.C. and Henry Witcomb  of Crown Office Row represented the defendants and claimant respectively in this case. None of them have had anything to do with the writing of this post.

I have blogged before on the Pandora’s box of ethical problems and dilemmas emerging out of our increasing understanding of genetic disorders (see here, here and here), and here is a case that encompasses some of the most difficult of them.
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Genetic testing of children up for adoption

27 April 2013 by

12280487228O6zG0Y and Z (Children), 25 April 2013 [2013] EWHC 953 (Fam) – read judgment

Having children is a lottery. No judge or court in the land would sanction the regulation of childbearing, however feckless  the parents, unsuitable the conditions for childrearing, or unpromising the genetic inheritance.

Adoption on the other hand is stringently regulated, set about with obstacles for prospective parents, and strictly scrutinised by an army of authorities backed up by specialist family courts and a battery of laws, statutory instruments and guidance papers. Usually the filtering is in one direction only: the suitability of the parents to the child or children up for adoption. But sometimes it goes the other way, and this case raises the fascinating and somewhat futuristic question of whether children’s chance of finding a suitable home might be increased by genetic testing.

The circumstances were somewhat exceptional here, since the local authority had ascertained from the biological father  of the two young boys in question that they might have a chance of inheriting a rare genetic disorder of the central nervous system. Huntington’s Chorea is caused by a single gene mutation on chromosome IV and causes damage of the nerve cells and areas of the brain which in due course leads to severe physical, mental and emotional deterioration. Anyone whose parent has the disease is born with a fifty per cent chance of inheriting the gene. Anyone who inherits the gene will, at some stage, develop the disease. 
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