confidentiality


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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Stop Powers under the Terrorism Act 2000 incompatible with Article 10

21 January 2016 by

David MirandaDavid Miranda -v- Secretary of State for the Home Department  [2016] EWCA Civ 6 – read judgment.

On Tuesday the Court of Appeal handed down its judgment on David Miranda’s detention under the Terrorism Act 2000 and, while upholding the lawfulness of the detention in the immediate case, ruled that the stop powers under Schedule 7 of the Terrorism Act lack sufficient legal safeguards to be in line with Article 10.

by David Scott

See RightsInfo’s coverage here. For our coverage of the High Court’s previous decision see here, and on his original detention here and here.

The Case

Mr Miranda, the spouse of then-Guardian journalist Glenn Greenwald, was stopped and detained by the Metropolitan Police at Heathrow Airport on 18 August 2013 under paragraph 2(1) of Schedule 7 of the Terrorism Act 2000. He was questioned and items in his possession were taken by police, including encrypted material provided by Edward Snowden. Mr Miranda was detained for nine hours, the maximum period permitted at the time (since reduced to six hours).
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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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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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Police bid to obtain journalistic material refused – Supreme Court

13 March 2014 by

Met-police-Scotland-Yard-007R (on the application of British Sky Broadcasting Limited) (Respondent) v The Commissioner of Police of the Metropolis (Appellant) [2014] UKSC 17 – read judgment

This was an appeal from a ruling by the Administrative Court that it was procedurally unfair, and therefore unlawful, for BSkyB to have had a disclosure order made against it without full access to the evidence on which the police’s case was based and the opportunity to comment on or challenge that evidence.  The following report is based partly on the Supreme Court’s press summary (references in square brackets are to paragraphs in the judgment):

Factual background

Sam Kiley is a journalist who has for many years specialised in covering international affairs and homeland security. In 2008 he was an “embedded” journalist for a period of months within an air assault brigade in Afghanistan, where he was introduced to AB. CD was also serving in Helmand at the same time. 
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Tax avoiders don’t have human rights – Philippa Whipple QC

6 November 2013 by

film_movie_tape_0_1R (on the application of Ingenious Media Holdings plc and Patrick McKenna v Her Majesty’s Revenue and Customs [2013] EWHC 3258 (Admin) –  read judgment 

Sales J has rejected an application for judicial review by Ingenious Media Holdings plc and Patrick McKenna, who complained that senior officials in HMRC had identified them in “off the record” briefings.

Ingenious Media is an investment and advisory group which promotes film investment schemes which allow participators to take advantage of certain tax reliefs and exemptions.  HMRC has long been fighting to close down these “film schemes”, with some success (see the Eclipse 35 appeal).
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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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