Category: Medical


Fine tuning medical diagnoses to rare genetic disorders

9 March 2013 by

298x232-dna_genetic_test-298x232_dna_genetic_testMeiklejohn v St George’s Healthcare Trust [2013] EWHC 469 (QB) – read judgment

Richard Booth of 1 Crown Office Row acted for the claimant in this case. He is not the author of this post.

There is no doubt that medical diagnosis and therapy are struggling to keep pace with the genetic information pouring out of the laboratories and sequencing centres. And the issue of medical liability is being stretched on the rack between conventional treatment and the potential for personalised therapy. Treatment of disease often turns out to be different, depending on which gene mutation has triggered the disorder. However fine tuned the diagnosis, it may turn out to be profoundly wrong in the light of  subsequent discoveries.

This is perhaps an oversimplified characterisation of what happened in this case, but it exemplifies the difficulties facing clinicians and the courts where things go wrong, against the backdrop of this fast-moving field of scientific endeavour.
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Mid Staffs Inquiry report: Human rights abuses need human rights solutions – Sanchita Hosali

6 February 2013 by

Stafford hospital report over deaths

This guest post is by Sanchita Hosali, Deputy Director at the British Institute of Human Rights. A number of 1 Crown Office Row barristers represented parties to the Inquiry, none of whom has contributed to this post.

Hundreds of people have died; others have been starved, dehydrated and left in appalling conditions of indignity, witnessed by their loved ones. Surely this is what Chris Grayling, Justice Secretary, had in mind when he recently cautioned to need to “concentrate on real human rights”?

Yet the rights, legal accountability, and practical benefits of the Human Rights Act are rarely mentioned in discussions about the shocking failures of care such as those featured in today’s Public Inquiry Report in events at Staffordshire Hospital between 2005-2008.

As Mr Francis makes clear, what happened at Staffordshire Hospital was a breach of basic rights to dignity and respect, and what is needed now are stronger lines of accountability and culture change which places patients at the heart of healthcare. Human rights speak to the fundamental standards that the Report says are needed to achieve this transformation in care.

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Mid Staffordshire Public Inquiry report published

6 February 2013 by

Screen Shot 2013-02-06 at 11.37.46The Mid Staffordshire NHS Foundation Trust Public Inquiry report has been published. Robert Francis QC was tasked to investigate the role of the commissioning, supervisory and regulatory bodies in the monitoring of Mid Staffordshire Foundation NHS Trust. 

Read the report:

The report built on the work of Francis’s earlier independent inquiry into the care provided the hospital between January 2005 and March 2009. A number of 1 Crown Office Row barristers, including me, represented various participants at the Inquiry. They were:

  • Sally Smith QC and Christopher Mellor for the Strategic Health Authority;
  • David Hart QC for the CQC
  • Owain Thomas for the NHSLA;
  • Jeremy Hyam and Kate Beattie for a number of the families;
  • Shaheen Rahman and Peter Skelton for AVMA and the Patients Association;
  • Adam Wagner for the Department of Health.

Child radiotherapy case: “one cannot enjoy even diminished quality of life if one is not alive”.

19 January 2013 by

Sally+Roberts+arriving+at+the+High+CourtAn NHS Trust v SR [2012] EWHC 3842 (Fam) – read judgment

The highly publicised case about a seven year old boy whose estranged parents could not agree about the necessary treatment following surgery for his brain tumour was resolved by a firm ruling in favour of orthodox medicine by Bodey J, four days before Christmas.

The facts of the case are well known, but it may be instructive to lay out some of the details of the procedure that follows in a situation like this, and to point up the approach of the courts to a matter where orthodox science lies flat against the claims of complementary medicine. Where the life of a child is at stake, there is no polite equivocation between the two.

Background

Briefly, the mother would not agree to the recommended post-operative course of chemo- and radiotherapy (carrying an 80% chance of success), believing instead that her son would fare better with alternative forms of treatment and would avoid or reduce the undoubtedly detrimental long-term side effects of the treatment package being proposed. In a serious matter such as this, where the parents cannot agree, an application has to be made to the court for a declaration that the procedure in question is lawful. That involves a decision as to the child’s best interests, being the court’s paramount consideration. Hence it was incumbent on the NHS Trust concerned to apply to the High Court to determine the issue of N’s treatment following on from his brain surgery two months previously.
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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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Should any genetic information be a trade secret?

3 December 2012 by

dna_infograph1I posted previously on the decision by the   US Court of Appeals for the Federal Circuit to uphold the patents on the genetics company Myriad’s gene sequences for breast cancer research and therapy. In September 2012 the American Civil Liberties Union once again petitioned for Supreme Court review.  The Court should decide today whether to review the case.

The whole question of proprietary claims over genetic information is not limited to patents and is very much open to debate.  In my piece on the US Bioethics Commission’s report to the Obama administration I discussed the challenge faced by lawmakers in regulating the increasing flow of genomic information so as to protect people’s privacy without shutting down the flow of data vital to biomedical research. Whilst it is true that the availability of patent protection creates vital incentives for such research, genetic testing companies like Myriad can extend their exclusivity beyond their patented products by creating limiting access to private databases containing information vital to interpreting the clinical significance of human genetic variations. There is concern that this threatens to impede the clinical interpretation of genomic medicine. The Genomics Law Report Journal reports that

National health systems and insurers, regulators, researchers, providers and patients all have a strong interest in ensuring broad access to information about the clinical significance of variants discovered through genetic testing.
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Why saving the Human Rights Act will be good for your health – Alice Donald

24 October 2012 by

Debate about whether the Human Rights Act (HRA) might be replaced by a new UK Bill of Rights often dwells on the potential loss, or at least weakening, of the legal route to accountability and redress for victims of human rights violations. An event next month in Liverpool reminds us how much more might be lost if the HRA were to be scrapped or watered down. In particular, it highlights the significance of section 6 of the Act, which requires all public authorities to act in a way which is compatible with European Convention rights unless primary legislation requires them to act otherwise.

The event in question is the launch of the latest results of the Human Rights in Healthcare programme. The programme was set up in 2006 by the Department of Health and the British Institute of Human Rights; in 2011-12, it was led by Lindsey Dyer of Mersey Care NHS Trust. Under its leadership, pilot NHS Trusts have used human rights to design and run services in areas as diverse as dementia care, acute hospital settings, district nursing and care homes.

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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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Can an individual claim ownership of “life’s instructions” – a human gene?

20 September 2012 by

Yes, says the US Court of Appeals for the Federal Circuit, upholding the validity of human gene patents related to breast and ovarian cancer (Association for Molecular Pathology and others v the Patent Office and Myriad Genetics – read judgment) UPDATED

The three judge panel ruled in a 2-1 decision that the biotechnology company Myriad was entitled to its patents on the molecules because each of them represented “a non-naturally occurring composition of matter”. The court also upheld Myriad’s patent on a technique for identifying potential cancer therapies by monitoring effects on cell growth, but denied their claim on assessing cancer risk by comparing DNA sequences because the method is based on “abstract, mental steps” of logic that are not “transformative”.

This fascinating judgment is a model of clarity and fluency in this difficult area. But what does this intellectual property tussle have to do with human rights? Well, there is nothing unfamiliar to human rights lawyers in litigation over the availability of life-saving treatment  (patient B, the Herceptin case and the antiretroviral litigation in South Africa are three examples that spring to mind). And much of it begins in the laboratory, with the critical allocation of exclusivity rights.
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“Locked-in” sufferer’s challenge to ban on voluntary euthanasia fails in the high court

16 August 2012 by

The Queen(on the application of Tony Nicklinson) v Ministry of Justice [2012] EWHC 2381 (Admin) – read judgment

Lord Justice Toulson, sitting with Mrs Justice Royce and Mrs Justice Macur, has  handed down judgment in the case of Tony Nicklinson and that of another “locked-in” syndrome sufferer, “Martin”. On all the issues, they have deferred to parliament to take the necessary steps to address the problems created by the current law of murder and assisted suicide.

Philip Havers QC  of 1 Crown Office represented Martin in this case. 

Tony Nicklinson sought a declaration of immunity from prosecution for a doctor who would give him a fatal dose of painkillers to end his life in Britain. He also sought a declaration that the current law is incompatible with his right to respect for private life under article 8, contrary to s1 and 6 of the Human Rights Act 1998, in so far as it criminalises voluntary active euthanasia and/or assisted suicide.

Martin’s claim was slightly different as his wife does not want to do anything which will hasten his death. He therefore asked for permission for volunteers to be able to help him get to the Dignitas clinic in Switzerland (under recent guidelines from the Director of Public Prosecutions only family members or close friends who are motivated by compassion are unlikely to be prosecuted for assisting a suicide). In the alternative he sought a declaration that section 2 of the Suicide Act is incompatible with the right to autonomy and private life under Article 8 of the European Convention. 
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Should we be using ‘special’ offences to prosecute crimes against disabled people? – Lucy Series

14 August 2012 by

Eleven Winterbourne View staff have pleaded guilty to 38 charges of ill-treatment and neglect of a mental health patient under s127 Mental Health Act 1983 (MHA).  In this post I want to consider why we need ‘special’ offences like s127 MHA and also s44 Mental Capacity Act 2005 (MCA), rather than prosecuting crimes in care settings using more ‘mainstream’ offences. 

The UN Convention on the Rights of Persons with Disabilities (CRPD), with articles emphasising access to justice (Article 13) and equal recognition before the law (Article 12) encourages us to think about how we can ensure disabled people have effective access to the law that protects us all before we develop parallel ‘special’ systems of rights protection (see, for example, Inclusion EuropeEuropean Disability Forum).  So my question is: why are we using ‘special’ offences of ill-treatment and neglect to prosecute crimes that occur in care, rather than the ordinary ‘offences against the person’ those outside of care rely upon?

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German court rules child’s religious circumcision can be a criminal offence – Analysis

27 June 2012 by

Updated | As has been widely reported, a regional German court has ruled that a Muslim boy’s religious circumcision was a crime and that it violated his basic constitutional rights to bodily integrity. This ruling has no direct effect on other European states, but will buoy the campaign against male circumcision.

Thanks to an admirably swift response from the Cologne Regional Court to my request, I have uploaded the appeal decision (the important one), the original decision which was under appeal and the court’s press release. All are in German. I have also uploaded a version of the appeal judgment in English (updated – I have been sent a much better English translation).

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BC Supreme Court grasps the nettle in right to die case

21 June 2012 by

Lee Carter, Hollis Johnson, Dr. William Shoichet, The British Columbia Civil Liberties Association and Gloria Taylor v Attorney General of Canada (2012 BCSC 886) 15 June 2012 – read judgment

Interest in the “locked-in syndrome” cases currently before the High Court runs high.  We posted here on the permission granted to locked-in sufferer Tony Nicklinson  to seek an advance order from the court that would allow doctors to assist him to die under the common law defence of necessity.

He is also arguing that the current law criminalising assisted suicide is incompatible with his Article 8 rights of autonomy and dignity. The other case before the three judge court involves another stroke victim who is unable to move, is able to communicate only by moving his eyes, requires constant care and is entirely dependent on others for every aspect of his life. (Philip Havers QC of 1 Crown Office Row is acting for him)

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Judge orders that anorexic woman can be force-fed | Analysis

19 June 2012 by

Re E (Medical treatment: Anorexia) [2012] EWHC 1639 (COP) – Read judgment

Update | In an earlier version of this post a question was raised by the author concerning the implications of funding restrictions within the department of the Official Solicitor for cases similar to E’s. The author is happy to make clear that no criticism is made of the actions of the OS in this or indeed any other case in the judgment of Peter Jackson J or in this post.

Mr Justice Jackson has ruled that it would be lawful and in the best interests of a 32 year old woman (referred to in the judgment as “E”) for her to be fed, using physical force or chemical sedation as necessary, for a period of “not less than a year”.

The judgment has sparked considerable press attention, and is also reported to have drawn criticism from Rochdale Lib Dem MEP Chris Davies. Against that background, this post intends to offer a modicum of analysis as to what was decided, why and what lessons the case holds for the future.

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Unlawful to refuse support for Portuguese with AIDS – Nearly Legal

15 May 2012 by

De Almeida, R (on the application of) v Royal Borough of Kensington and Chelsea [2012] EWHC 1082 (Admin) – Read judgment

This was a judicial review of RBK&C’s refusal to provide support under s.21 and s.29 National Assistance Act 1948 and indeed to carry out an assessment under s.47 of the National Health Service and Community Care Act 1990.

Mr De A is a Portuguese national. He lived in the UK from 1998 to 2001 and from 2008 to date. He worked during the first period and for a year after his return. Mr De A had contracted HIV and AIDS. His health deteriorated so that he was not able to work. His prognosis in October 2010 was that he had about a year to live. At the time of the first hearing in this case in November 2011, his prognosis was about 6 months.

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