confidentiality


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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Interested in this online course?

21 October 2019 by

Cambridge University Institute of Continuing Education

Law in a changing genetic landscape (25 February – 12 April 2020)

Law creates artificial relationships between non-related people and entities. It even gives person-hood to non-biological beings such as companies and partnerships (although not yet to non-human species). Genetics describe the underlying relationship of all biological beings. For centuries, law and genetic science developed in parallel with very little overlap. But as genetic discoveries ride the crest of the technological revolution, law finds itself on the back foot. Legal instruments, such as property law and the law of obligations between non-related individuals were crafted in feudal times with the aim of protecting property beyond the death of the owner. With genetic discoveries, we face a myriad of questions, from ownership of gene editing techniques to the dangers of discrimination based on genetic predisposition for disease.

Read full course description here

Related posts:

The “long arm” of the police – how “confidential “ are family proceedings?

7 August 2019 by

“Not very” seems to be the answer in the Court of Appeal decision in M (Children) [ 2019] EWCA Civ 1364

Sir Andrew McFarlane upheld Keehan J’s decision to disclose the parents’ initial statement and position statement to the police following the initial interim care hearing.

In family proceedings parents are advised that their evidence is confidential to those proceedings. They are encouraged to be open and frank and to understand that their children’s interests are the Court’s main concern.

But something seems to be eroding these principles, a trend set since the case of Re H (Children) [2009] EWCA.

The Court of appeal approved the test from Re C ( see below) and gave it the “fit for purpose” badge. The decision should be seen in the context of this being a police terrorism enquiry.

The Facts

The case involved two children aged 2 and 3, born in Syria to parents who were UK Citizens. The parents had travelled to Syria in 2014 against FCO advice, and met there.
The family came to the attention of the UK authorities in November 2018 when they were in a detention centre in Turkey, intending to travel to the UK. The Home Secretary made a Temporary Exclusion order against the father.
The family returned to the UK in January 2019. The parents were arrested under S. 41 of the Terrorism Act 2000, interviewed and subsequently granted bail. The children were placed in foster care initially under police protection.
On 11 January a hearing took place for an application for interim care orders. The threshold was pleaded on the basis of the harm the children were likely to have been exposed to whilst in Syria. The parents did not contest the application, with an interim care plan for placement with grandparents.

On 1 February the police investigating potential criminal activity by the parents made an application to the Family Court for disclosure of the parents’ witness and Position statements. The application was heard by Keehan J on the 8th April, who granted disclosure to the police.

The parents appealed.


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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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Judge allows paternity test for DNA disease analysis

20 April 2016 by

298x232-dna_genetic_test-298x232_dna_genetic_test

Spencer v Anderson (Paternity Testing) [2016] EWHC 851 (Fam) – read judgment

A fascinating case in the Family Division throws up a number of facts that some may find surprising. One is that this is the first time the courts in this country have been asked to direct post-mortem scientific testing to establish paternity. The other is that DNA is not covered by the Human Tissue Act, because genetic material does not contain human cells. One might wonder why the statute doesn’t, given that DNA is the instruction manual that makes the  human tissue that it covers – but maybe updating the 2004 law to cover genetic material would create more difficulties than it was designed to resolve.

The facts can be briefly stated. The applicant had been made aware of his possible relationship to S, who had died of bowel cancer some years before. When S had presented with the disease, it turned out that there was a family history of such cancer. The hospital treating him therefore took a blood sample and extracted DNA from it to test for high-risk genes. If the applicant was the son of the deceased he would have a 50% risk of inherited predisposition to bowel cancer. This risk would be mitigated by biannual colonoscopies.
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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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“What’s in a name”? Privacy and anonymous speech on the Internet

1 October 2014 by

internet-anonymityKeynote speech by Lord Neuberger at 5 RB Conference on the Internet, 30 September 2014

The President of the Supreme Court has delivered a very interesting address on the protections that should be afforded to what might be termed the “new Fourth Estate” – journalism on the internet. The following summary does not do justice to his speech but is meant to act as a taster – download the full text of his talk here.

Lord Neuberger explores the interrelationship of privacy and freedom of expression, particularly in the light of developments in IT, and especially the internet. He recalls a colourful eighteenth century figure who contributed a series of letters to a widely disseminated journal under the pseudonym of “Junius”. He managed to make such effective attacks on public figures he brought about the resignation of the Prime Minister, the Duke of Grafton, in 1770. Because of his anonymity this character was able to make criticisms of the powerful for which others of his time faced prosecution.

Junius offered a voice of firm if sometimes scurrilous criticism, prompting both political and legal change. He is rightly remembered as one of the greatest political writers in an age dominated by great figures, yet his identity [still]  remains a mystery.

And it is this lack of traceability that links Junius with today’s bloggers. Print journalists are – with the exception of writers for The Economist – known figures. But forty percent of the world’s population use the internet, and despite initial expectations that bloggers and tweeters could hide behind pseudonyms, it has turned out to be extremely difficult for internet writers to maintain their anonymity. The public and the courts increasingly recognise the press’ interest in publishing the names of individuals in appropriate circumstances.
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Legal privilege, Articles 6 and 8, and iniquity

12 August 2014 by

464795356JSC BTA Bank v. Ablyazov et al 8 August 2014, Popplewell J,  read judgment  

What you say to your lawyers is truly confidential; no-one, not even a regulator or prosecutor can see it. This is protected by the right to privacy under Article 8, and the right to a fair trial under Article 6 (which includes the right to access to lawyers).

Well, that is the general rule. And this case reminds us that there is an exception to this – when the relationship between client and lawyer is affected by “iniquity”.

As we will see, Mr Ablyazov fell foul of this exception, and papers which he sent to his various solicitors have been ordered to be produced. As we will also see, he appears to be a very bad boy indeed. It is however more difficult to draw the line between his sort of case and that in which a defendant says he has a defence, though in the end is disbelieved by the court.

And one interesting aspect of this judgement is Popplewell J’s clear explanation of this difference – a fine line indeed.

So now to Mr Ablyazov, and his badness.

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Disclosure of medical records breached patient’s human rights – Strasbourg

30 April 2014 by

Hospital-BedL.H. v Latvia [2014] ECHR 453 (29 April 2014) – read judgment

The release of confidential patient details to a state medical institution in the course of her negotiations with a hospital over a lawsuit was an unjustified interference with her right to respect for private life under Article 8.

Background

In 1997 the applicant gave birth at a state hospital in Cēsis. Caesarean section was used, with the applicant’s consent, because uterine rupture had occurred during labour. In the course of that surgery the surgeon performed tubal ligation (surgical contraception) without the applicant’s consent.

In 2005, after her attempt to achieve an out-of-court settlement with the hospital had failed, the applicant initiated civil proceedings against the hospital, seeking to recover damages for the unauthorised tubal ligation. In December of 2006 her claim was upheld and she was awarded compensation in the amount of 10,000 Latvian lati for the unlawful sterilisation.
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Court of Appeal refuses anonymity for offender

25 October 2013 by

anonymity21Fagan, R (on the application of) v Times Newspapers Ltd and others [2013] EWCA Civ 1275 – read judgment

Only “clear and cogent evidence” that it was strictly necessary to keep an offender’s identity confidential would lead a court to derogate from the principle of open justice. The possibility of a media campaign that might affect the offender’s resettlement could not work as a justification for banning reporting about that offender, even though a prominent and inaccurate report about him had already led to harassment of his family.

This was an appeal by a serving prisoner, SF, against the dismissal of his application for anonymity and reporting restrictions in judicial review proceedings.
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From base pairs to the bedside: medical confidentiality in a changing world

12 December 2012 by

DNA database impact on human rightsThis week David Cameron announced plans  to introduce whole genome mapping for cancer patients and those with rare diseases within the NHS. 

Single gene testing is already available across the NHS ranging from diagnosing cancers to assessing patients’ risk of suffering side effects from treatment, but this initiative will mean that the UK will be the first country in the world to introduce the technology within a mainstream health system, with up to 100,000 patients over three to five years having their whole genome – their personal DNA code –sequenced. According to Chief Medical Officer Professor Dame Sally Davies

The genome profile will give doctors a new, advanced understanding of a patient’s genetic make-up, condition and treatment needs, ensuring they have access to the right drugs and personalised care far quicker than ever before.

What will this mean for medical confidentiality?  The official announcement ends with the following declaration:

1. Genome sequencing is entirely voluntary. Patients will be able to opt out of having their genome sequenced without affecting their NHS care.

2.  Whole genome sequence data will be completely anonymised apart from when it is used for an individuals own care.

3. A number of ways to store this data will be investigated. The privacy and confidentiality of NHS patients will be paramount in this decision.
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High Court calls for joined-up thinking on disclosure of sex offender information

29 October 2012 by

X (South Yorkshire) v Secretary of State for the Home Department and Chief Constable of Yorkshire  [2012] EWHC 2954 (Admin)- read judgment

The High Court has made an important ruling about the disclosure of information under the Child Sex Offender  Disclosure Scheme (CSOD).

This non statutory arrangement has been in place since March 2010. It  allows members of the public to seek details from the police of a person who has some form of contact with children with a view to ascertaining whether that person has had convictions for sexual offences against children or whether there is other “relevant information” about them which ought to be made available. This request could come from any third party such as a grandparent, neighbour or friend. The  aim of the scheme is described thus:

This is to ensure any safeguarding concerns are thoroughly investigated. A third party making an application would not necessarily receive disclosure as a more appropriate person to receive disclosure may be a parent, guardian or carer.  In the event that the subject has convictions for sexual offences against children, poses a risk of causing harm to the child concerned and disclosure is necessary to protect the child, there is a presumption that this information will be disclosed.

Anya Proops’ post on the Panopticon blog sets out a clear summary and analysis of the ruling by the President of the Queen’s Bench Division and Hickinbottom J. Here are a few more details about the judgment.
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Can we keep our genomes quiet? Some suggestions from the US

18 October 2012 by

DNA database impact on human rights

I have posted previously on the logistical difficulties in legislating against genetic discrimination.

The prospect that genetic information not only affects insurance and employment opportunities is alarming enough. But it has many other implications: it could be used to deny financial backing or loan approval, educational opportunities, sports eligibility, military accession, or adoption eligibility.  At the moment,  the number of documented cases of discrimination on the basis of genetic test results is small. This is probably due to the relatively few conditions for which there are currently definitive genetic tests, coupled with the expense and difficulty of conducting these tests. But genetic discrimination is a time bomb waiting to be triggered and the implications of whole genome sequencing (WGS) are considered in a very interesting and readable report by the US Presidential Commission for the Study of Bioethical Issues  Privacy and Progress in Whole Genome Sequencing. 

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Medical records not as private as they may first appear under human rights law

28 May 2010 by

General Dental Council v Rimmer [2010] EWHC 1049 (Admin) (15 April 2010) – Read judgment

A dentist has been ordered to hand over his patients’ medical records to a court in order to help his regulator prosecute him for misconduct. The case raises interesting questions of when the courts can override patient confidentiality which would otherwise be protected by the Human Rights Act.

When health professionals are being prosecuted for misconduct,their patients’ confidential records will almost invariably be disclosed to the court if requested, even without the patients’ consent. Some may find this surprising, given the fact that medical records almost invariably contain highly private and potentially embarrassing information which a person would justifiably not want disclosed in a public court. However, the situation is not as simple as it first appears, as demonstrated by the recent case of an allegedly dodgy dentist.


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