The doctor-patient relationship -- Consent, choice, and refusal : adults with capacity -- Treating adults who lack capacity -- Children and young people -- Confidentiality -- Health records -- Contraception, abortion, and birth -- Assisted reproduction -- Genetics -- Caring for patients at the end of life -- Euthanasia and physician assisted suicide -- Responsibilities after a patient's death -- Prescribing and administering medication -- Research and innovative treatment -- Emergency situations -- Doctors with dual obligations -- Providing treatment and (...) care in detention settings -- Education and training -- Teamwork, referral, delegation, and shared care -- Public health dimensions of medical practice -- Reducing risk, clinical error, and poor performance. (shrink)

In February 2020, the British Medical Association will be surveying members for their views on what the BMA’s position on physician-assisted dying should be. The BMA is currently opposed to physician-assisted dying in all its forms, a position that was agreed in 2006 at the annual representative meeting, the Association’s policy-making conference.1 As previously reported in Ethics briefing,2 the decision to survey members follows a motion passed at last year’s ARM which called on the BMA to “carry out a poll (...) of members to ascertain their views on whether the BMA should adopt a neutral position with respect to a change in the law on assisted dying”. The results from the survey will not determine BMA policy. Rather, the results be published ahead of this year’s ARM and provided to those attending to inform a debate and discussion on the BMA’s policy position. More information about the survey, including a briefing pack of useful information, and information for BMA members on how to participate can be found online at www.bma.org.uk/PAD. ### High Court rejects Judicial reviews on assisted suicide The High Court has refused permission for two separate challenges to the law on assisted suicide in the UK to proceed to a full hearing. In the first case, Phil Newby, who has motor neuron disease, applied for judicial review of the law on assisted suicide and asked for the court to carry out a detailed examination of what he termed “legislative facts” – that is, an examination of the existing evidence on the “costs, risks and benefits” of regulating assisted suicide – including a cross-examination of relevant expert witnesses.1 Handing down the judgement, Lord Justice Irwin and Mrs Justice May, held that assisted dying …. (shrink)

Doctors and medical students in the UK have voted in support of the decriminalisation of abortion for women who self-administer abortions and healthcare professionals who provide abortions within the context of their clinical practice. Abortion should be treated as a medical issue rather than a criminal one. ### Background to the vote The vote took place at the end of June during the British Medical Association’s Annual Representative Meeting, where representatives of doctors and medical students from across the British Isles (...) gathered to set BMA policy through democratic procedures. Representatives considered the issue of decriminalisation during a 2-hour debate, where diverse and opposing viewpoints were heard. The debate was informed by a neutral discussion paper that was published by the BMA in February, which provided a guide to some of the key legal and ethical issues raised by the debate around decriminalisation.1 The BMA’s new policy only relates to whether abortion should or should not be a criminal offence; the policy does not address the broader issue of when and how abortion should be available. The BMA has established policy on these issues which remains unchanged.2 ### The law on abortion Induced abortion is currently a crime throughout the British Isles. There are, however, a range of exceptions to the crime laid out in statute and/or common law, for example, in England, Scotland and Wales, under the Abortion Act 1967. Any healthcare professionals operating within those defined exceptions, which include grounds for authorising an abortion and procedural requirements, can lawfully carry out an abortion as a clinical procedure. Outside these defined exceptions, the criminal offences potentially apply both to those who participate in carrying out abortions for others, including doctors, nurses and midwives, and to women who carry out abortions on themselves. For example, healthcare professionals who do not follow procedural requirements can attract criminal sanctions …. (shrink)

The British Medical Association has published a new report on health and human rights in immigration detention in the UK. Locked up, locked out outlines how aspects of current detention policies and practices are detrimental to the health of those detained and the challenges doctors face in providing healthcare in the immigration detention setting. It makes a number of recommendations aimed at addressing policy and practice which impact on health and well-being, including calling for an end to the routine use (...) of detention as a means of monitoring those facing removal from the UK and for the introduction of a time limit on the length of time individuals can be detained. It also provides guidance for doctors working in these settings on some of the common ethical and professional dilemmas they may face. The report can be accessed and downloaded at www.bma.org.uk/immigrationdetention. The Government has announced its intention to review mental health legislation for England and, in relation to non-devolved issues, for Wales.1 The Government states that it is ‘committed to delivering parity of esteem between mental and physical health’, although it does not clarify the meaning of ‘parity of esteem’. Similarly, the Government states that it wants to ensure that people with mental health problems ‘are treated with dignity, and that their liberty and autonomy is respected as far as possible’. Again, the Government has not indicated the meaning of ‘as far as possible’. Although not directly mentioned in the review’s terms of reference, it must be set against the background of changing legal and ethical expectations in relation to the rights of those with mental or cognitive disorders and disabilities. The UK is a signatory to the United Nations Convention on the Rights of People with …. (shrink)

Erdoğan intensifies assault on Turkish civil society Deeply worrying reports from the Turkish Medical Association suggest that the Turkish President Recep Erdoğan is hardening his attack on civil society in Turkey, using the legitimate activities of the TTB as the flimsiest of pretexts. In January 2018, the TTB issued a short statement raising concerns about the impact on public health of Turkey’s military operation in the Kurdish-controlled region of northern Syria. It denounced the operation saying ‘No to war, peace immediately’. (...) In response to the Association’s press release, the Turkish president publicly accused the 83 000 strong TTB of being terrorist sympathisers. ‘This institution has nothing to do with Turkishness and nothing about them is worthy of the notion of Turkishness’, he said. 1 Eleven of its senior doctors, including the Association’s chairman, were later detained following an order from a Turkish prosecutor. President Erdoğan made it... (shrink)

Essex University, in association with Johns Hopkins Center for Public Health and Human Rights, has brought out a timely report highlighting the increasing global criminalisation of the provision of healthcare.1 The report, with a foreword by Professor Dainius Puras, United Nations Special Rapporteur on the right to health, explores the pressures on medical impartiality arising in large part from both global and national responses to the threat of terrorism. Both international humanitarian law, human rights law and long-established principles of medical (...) ethics—as set out in various declarations of the World Medical Association—establish an absolute principle that all people, regardless of their beliefs, affiliation or status, have rights of access to appropriate healthcare. And this right extends to wounded and sick combatants, as well as civilians, during times of armed conflict. One of the challenges in this area is that in recent years, many conflicts have become ‘asymmetric’. Contemporary conflicts seldom involve opposing state armies. Instead, they increasingly involve irregular combatants, often labelled ‘terrorists’ or ‘insurgents’ by the states they are opposing. In response to these threats, many states have developed sometimes draconian legislation outlawing terrorist groups and those offering support. The danger, outlined in some detail in the report, is that the vital distinction between the impartial provision of medical care and the criminal offence of materially aiding terrorism is lost. In 2016, largely in response to the deliberate targeting of healthcare personnel and facilities in the conflicts disfiguring the greater Middle …. (shrink)

Healthcare professionals are currently working under extreme pressure as they respond to the pandemic outbreak of COVID-19. At the time of writing, there is currently no effective vaccine or anti-viral treatment. The pandemic is fast-moving, relatively unpredictable and of uncertain duration. In many countries, it is placing an enormous stress on healthcare resources and providing care to existing standards is proving difficult. Unfortunately, in some countries, health services have been overwhelmed. The impact of the pandemic on resource-poor countries is of (...) particular concern. This extraordinary situation is raising, or has the potential to raise, many ethical challenges for doctors delivering care to patients. It is possible, for example, that there may be points in this pandemic where decisions need to be made about who should have access to finite specialised intensive care beds, drugs and equipment. This has happened in some countries and, despite efforts by the UK Government to reduce demand and increase supply, it is still possible that this could happen in the UK. Some hospital trusts in the UK are already reporting concerningly low supplies of oxygen and vital medicines such as propofol and alfentanil.1 In these circumstances, where not everyone can be treated, difficult ethical decisions will have to made. For example, can some patients be prioritised over others? How should a doctor decide on which patients to treat? Can treatment be withdrawn from patients who are currently being treated, but are not responding, in order to offer treatment to those who may have a better chance of benefiting? The UK is also reporting concerningly low supplies of vital personal protective equipment for frontline workers, raising the question - what are a doctor’s obligations to treat patients, in circumstances that present a high …. (shrink)

In February 2014, the Belgian Parliament passed legislation allowing euthanasia for terminally ill children of all ages by 86 votes to 44, with 12 abstentions. The Bill became law in early March after being signed by the King, making Belgium the first country in the world to abolish age restrictions for euthanasia. Previously, the youngest age at which euthanasia was permitted was 12 years old in The Netherlands.1Euthanasia was legalised in Belgium in 2002, and the new legislation introduces amendments to (...) the law extending euthanasia to minors in certain circumstances. Euthanasia is now permissible for children of all ages where the child has a “terminal and incurable illness”, experiences “constant and unbearable physical suffering”, and death is expected to occur within a “brief period”. The child must be deemed capable of making the decision, and have the agreement of their parents.Belgian law sets no timetable for euthanasia from the point at which the patient first expresses a wish to die. As with adults seeking euthanasia, any request must be made in writing. A physician and “outsider” brought in to give a second opinion must agree upon the diagnosis and prognosis, and a paediatric psychiatrist or psychologist must certify in writing that the child possesses “the capacity of discernment”. Following this, the child's physician must meet with the parents to inform them of the outcome of the consultation and ensure they are in agreement with the child's request. The child and the family must receive psychological care and support if so desired.The move provoked heated debate and divided the medical, legal and political professions in Belgium. A group of 160 of the country's paediatricians opposed a change in the law, citing concerns about the largely subjective assessment of the “capacity of discernment”, and drawing attention to advances in …. (shrink)

In June 2021, the BMA published its report on moral distress and moral injury in UK doctors.1 The report includes definitions of the terms ‘moral distress’ and ‘moral injury’ as well as a summary of how the concepts have developed over time. There is also an analysis of the BMA’s pan-profession survey of moral distress and moral injury of doctors in the UK, the first of its kind. The impact of COVID-19 and recommendations for tackling moral distress also feature. Many (...) may be unfamiliar with the concepts of ‘moral distress’ and ‘moral injury’. These terms are relatively new, and debate is ongoing in academic circles on the best way to understand them.2 Some use the terms interchangeably. The BMA defines moral distress as the psychological unease generated where professionals identify an ethically correct action to take but are constrained in their ability to take that action. Even without an understanding of the morally correct action, moral distress can arise from the sense of a moral transgression. More simply, it is the feeling of unease stemming from situations where institutionally required behaviour does not align with moral principles. This can be as a result of a lack of power or agency, or structural limitations, such as insufficient staff, resources, training or time. The individual suffering from moral distress need not be the one who has acted or failed to act; moral distress can be caused by witnessing moral transgressions by others. Moral injury can arise where sustained moral distress leads to impaired function or longer-term psychological harm. Moral injury can produce profound guilt and shame, and in some cases also a sense of betrayal, anger and profound ‘moral disorientation’. It has also been linked to severe mental health issues. There is increasing recognition across the UK of the problem …. (shrink)

On 8 October 2020, the British Medical Association published the results of its survey of BMA members on physician-assisted dying. With 28 986 respondents, this was one of the largest surveys of medical opinion on this topic ever carried out. This represents 19.35% of those who received an invitation to participate and the respondents were broadly representative of the BMA’s overall membership. The BMA was clear throughout this process that the results of the survey would not determine its policy. Its (...) current policy of opposition to all forms of physician-assisted dying would remain unless and until the Representative Body, which makes BMA policy, decided otherwise. The survey results would, however, inform a future debate on policy, currently scheduled to take place in June 2021. When asked what the BMA’s position should be on whether there should be a change in the law to allow doctors to prescribe drugs for an eligible patient to self-administer to end their own life, 40% said the BMA should be supportive, 33% opposed, 21% thought the BMA should be neutral and 6% were undecided. In relation to their own personal views, 50% were supportive, 39% opposed and 11% undecided. When asked whether they would be willing to participate in some way in the process, if it were to be legalised, 36% said yes, 45% said no and 19% were undecided. The same three questions were asked about a change in the law to allow doctors to administer drugs to end the life of an eligible patient. In response, 40% thought the BMA should oppose such a change, 30% thought the BMA should be supportive and 23% thought the BMA should be neutral; 7% of members responding were undecided on this question. In …. (shrink)

In April, the UK House of Commons Science and Technology committee published a report evaluating the readiness of the National Health Service to incorporate genomic testing into mainstream service provision.1 The committee also examined some of the research and regulatory considerations in relation to the ongoing development of genome editing. ### Genomics in the NHS The main focus of the report is the 100,000 Genomes Project and the various practical and ethical challenges associated with the planned roll-out of the Genomics (...) Medicine Service in the NHS. The 1 00 000 Genomes Project was launched in 2012 and is the first large-scale whole genome sequencing research study of its kind in the world. The overall objective is to sequence genomes from NHS patients with a rare disease and their families, and from patients with specific cancers. The study seeks to benefit patients by potentially providing a diagnosis, gain new scientific insights, increase public knowledge of genomic medicine, encourage investment, and accelerate the uptake of genomic medicine in the NHS. At the time of writing the project had sequenced over 55 000 genomes and it is expected that the full 1 00 000 will be completed by the end of 2018. Building on the success of the project NHS England announced the establishment of a national NHS Genomic Medicine Service to provide ‘comprehensive and equitable access to the latest in genomic testing and management for the whole country, regardless of condition and where people live.’2 The service is set to be operational this year. The committee acknowledged the range of potential benefits that whole genome sequencing could have for patient care, however it also highlighted that there was a currently a lack of ‘sufficiently unambiguous evidence’ for its …. (shrink)

During the first UK wave of the pandemic, there were two areas of immediate ethical concern for the medical profession. The first was the possibility that life-saving resources could be overwhelmed. Early reports from hospitals in the Italian city of Bergamo suggested that ventilatory support might need rationing and emergency ‘battlefield’ triage was a real possibility.1 In the UK, several professional bodies, including the British Medical Association and the Royal College of Physicians rapidly developed guidance for doctors should triage become (...) a reality.2 The second issue was the acute shortage of personal protective equipment. Where doctors were unable to protect their patients – and themselves – from the risk of COVID-19, ethical challenges emerged. Ordinarily, doctors and patients do not present risks of significant harm to each other. To shift to a position where every patient – and every health professional – could potentially be a threat presented serious clinical and ethical challenges. To treat with inadequate PPE, so options for mitigating harms are radically reduced, deepens the challenges. Among the questions the BMA wrestled with was the extent of doctors’ duties to treat infected or potentially infected patients in the absence of effective PPE. The BMA was clear that despite obligations to treat, medicine is not a self-sacrificing profession: there were limits to the risk doctors could be required to expose themselves to.3 These issues no longer seem so pressing. In the UK at least, there is adequate PPE and with the second steep wave behind us, and significant numbers vaccinated, it is less likely that triage will be required in the UK. But as those concerns have receded so other ethical questions have arisen. Among them is a cluster of issues associated with what might be called COVID-19’s indirect harms. Understandably, in response to …. (shrink)

In July 2019, Stella Creasy MP and her team succeeded in attaching an amendment to a largely administrative bill which would require the UK government to liberalise abortion laws in Northern Ireland by 21 October 2019, provided the Northern Ireland government does not resume before that date.1 The amendment succeeded in the Commons, 332 votes to 99 and later, with some adjustments, in the Lords, 182 votes to 37. The Bill received Royal Assent on 24 July 2019. In Northern Ireland, (...) abortion remains a criminal offence punishable by up to life imprisonment in all except exceptional circumstances, that is, where it is ‘necessary to preserve the life of the woman’ or where there is a ‘risk of serious adverse effect which is either long term or permanent’.2 The law makes no provision for women who are pregnant as a result of rape, incest or in the case of fatal fetal abnormality. Because there is a lack of clarity around which circumstances or conditions would have a sufficiently ‘serious and long-term adverse effect’, it has been argued that the law has had a ‘chilling effect’ on service provision.3 As a result, only 13 abortions were performed in Northern Ireland in 2018/2019.4 Instead, more than 1000 women travelled from Northern Ireland to England to access legal abortion services.5 A recent review of the law in Northern Ireland concluded that this situation disadvantages women who cannot afford to or are unable to travel.3 Women are also reportedly purchasing abortifacients unlawfully online, exposing them to the risk of prosecution as well as to risks where the pills are unsafe or lead to complications. Creasey’s amendment requires the Secretary of State for …. (shrink)

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority . Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and (...) information about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18 . This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.A big issue of debate in the UK has been, and continues to be, whether parents should tell their …. (shrink)

The British Medical Association and Royal College of Physicians have published new guidance, endorsed by the General Medical Council, on decision-making about clinically assisted nutrition and hydration and adults who lack capacity to consent. The development of the guidance follows a series of legal cases which has created confusion about the precise circumstances in which an application to the court is required before CANH is withdrawn which has culminated with the decision of the Supreme Court in National Health Service Trust (...) versus Y. 1 This confirmed that there is no requirement to go to court, providing there is agreement as to the patient’s best interests, the provisions of the Mental Capacity Act 2005 have been observed, and the relevant professional guidance has been followed. The new guidance covers all decisions to start, restart, continue, or stop providing CANH in patients who are not imminently dying, in circumstances where CANH is the primary life-sustaining treatment being provided. It goes beyond the category of patients in permanent vegetative state or minimally conscious state who have previously been the subject of court applications, and also covers decisions for patients with neurodegenerative conditions and patients who have suffered a sudden onset brain injury in addition to having multiple comorbidities or general frailty which is likely to impact on life expectancy. It provides a clear statement of doctors’ legal responsibilities, covers the importance of robust best interests’ assessments and sets out the process to be followed for sufficient independent scrutiny of decisions. In light of some of the identified problems with decisions about CANH, a particular focus of the guidance is on the importance of regular best interests’ assessments, and it provides detailed practical guidance about how to approach these. The development of …. (shrink)

In February 2014, the Belgian Parliament passed legislation allowing euthanasia for terminally ill children of all ages by 86 votes to 44, with 12 abstentions. The Bill became law in early March after being signed by the King, making Belgium the first country in the world to abolish age restrictions for euthanasia. Previously, the youngest age at which euthanasia was permitted was 12 years old in The Netherlands.1Euthanasia was legalised in Belgium in 2002, and the new legislation introduces amendments to (...) the law extending euthanasia to minors in certain circumstances. Euthanasia is now permissible for children of all ages where the child has a “terminal and incurable illness”, experiences “constant and unbearable physical suffering”, and death is expected to occur within a “brief period”. The child must be deemed capable of making the decision, and have the agreement of their parents.Belgian law sets no timetable for euthanasia from the point at which the patient first expresses a wish to die. As with adults seeking euthanasia, any request must be made in writing. A physician and “outsider” brought in to give a second opinion must agree upon the diagnosis and prognosis, and a paediatric psychiatrist or psychologist must certify in writing that the child possesses “the capacity of discernment”. Following this, the child's physician must meet with the parents to inform them of the outcome of the consultation and ensure they are in agreement with the child's request. The child and the family must receive psychological care and support if so desired.The move provoked heated debate and divided the medical, legal and political professions in Belgium. A group of 160 of the country's paediatricians opposed a change in the law, citing concerns about the largely subjective assessment of the “capacity of discernment”, and drawing attention to advances in …. (shrink)

Court of appeal ruling on assisted dyingIn July 2013, the Court of Appeal ruled on an assisted dying case brought by Paul Lamb, a 58-year-old man who has been quadriplegic and without function in any of his limbs, apart from a little movement in his right hand, since a car accident in 1990.1 Mr Lamb was permitted by the Court to take over the legal case of Tony Nicklinson, who died in August 2012, less than a week after his request (...) for judicial review was rejected by the High Court.2 Like Mr Nicklinson, the severity of Mr Lamb's injuries means that he is unable to take his own life, other than by starvation. He would like his life to be ended, preferably by lethal injection administered at home, and does not want to travel to Switzerland for an assisted suicide.Mr Lamb's case was heard, along with that of Mr Nicklinson's wife and that of another man, ‘Martin’, in the Court of Appeal in May.The Court identified three issues from the parties’ submissions: The common law should provide a defence to murder where that takes the form of euthanasia in circumstances where another party is giving effect to the settled wish of a competent person. The legal prohibitions on those providing assistance constitute a disproportionate interference with Article 8 rights to a private and family life. The Director of Public Prosecution's policy statement on factors which he will take into account when considering whether or not to exercise his discretion in favour of prosecuting does not satisfy the …. (shrink)

The Supreme Court has ruled in the case of Y that there is no requirement to seek the approval of the Court of Protection in decisions to withdraw clinically assisted nutrition and hydration from patients in a prolonged disorder of consciousness.1 Mr Y was 52-year-old man who suffered a cardiac arrest after a myocardial infarction as a result of coronary artery disease. It was not possible to resuscitate him for well over 10 min, resulting in severe cerebral hypoxia which caused (...) extensive brain damage. Mr Y’s family and the NHS Trust treating him agreed that Mr Y would not want to be kept alive through the provision of CANH given his poor prognosis. They sought a declaration that it was not mandatory for applications of withdrawal of CANH to come before the court, which was granted by Mrs Justice O’Farrell in the first instance.2 Permission was granted for the appeal to ‘leapfrog’ the Court of Appeal and to proceed to the Supreme Court for consideration. In the interim, Mr Y died after contracting acute respiratory sepsis, but the Supreme Court determined that the appeal should go ahead in light of the general importance of the issues raised. In delivering the opinion of the Supreme Court on 30 July 2018, Lady Justice Black rejected the historical distinction that had been drawn between patients in PDOC and non-PDOC patients, in a way that had justified judicial involvement for patients in PDOC but not for others.3 She was clear that the correct approach to all cases involving CANH was to make a decision based on what was in the best interests of the patient. She further outlined that: > The documentation supplied to us shows that the difficulty that there is in assessing the patient and in …. (shrink)

Force-feeding of detainees at Guantánamo BayIn April, the US Department of Defense reportedly sent 40 additional military medical personnel, including doctors and nurses, to the Guantánamo Bay Naval Base to carry out the force-feeding of detainees on hunger strike.1 By the end of June, up to 104 of the remaining 166 individuals held in US military detention at Guantánamo were refusing food. The protest against conditions at the base, and the fate of those being held there—including those already cleared for (...) transfer or release—began in February 2013. In June, it was reported that as many as 44 of the hunger strikers were being force-fed by military medical teams.2The response by the US authorities to the hunger strike prompted expressions of outrage from the international medical community.3,4 In April, the American Medical Association wrote to the US secretary of defense, insisting that ‘forced feeding of [competent] detainees violates core ethical values of the medical profession.’5 Adding the voice of the profession in the UK to these calls, at its annual conference in June, the British Medical Association condemned the participation of doctors and nurses in the force-feeding, calling on governments worldwide to ensure that all prisoners have access to confidential, independent medical treatment, and supporting any clinician who challenged cruel, inhuman or degrading treatment. Also in June, the BMA Chairman wrote to President Obama and US secretary of defense, Hagel, urging them to immediately suspend medical involvement in force-feeding at Guantánamo, and to institute an urgent inquiry into how the current situation was allowed to develop.Force-feeding mentally competent adults who are refusing food is a clear violation of medical ethics and is unjustifiable, as articulated by the World Medical Association's Declaration of Malta.6 Doctors with dual loyalties, including military doctors, are bound by the same …. (shrink)

### High Court rejects assisted dying challenge The High Court has rejected the latest challenge to the law on assisted dying in the UK, brought by Noel Conway. Mr Conway, a retired college lecturer, was diagnosed with motor neuron disease in 2012. Since his diagnosis, his health has deteriorated and he is dependent on ever-increasing levels of assistance with daily life, including the use of non-invasive ventilation to help him breathe. He sought a declaration from the court that section 2 (...) of the Suicide Act 1961 was incompatible with his right to a private and family life under Article 8 of the European Convention on Human Rights. As part of his case, Mr Conway submitted the outline of an alternative statutory scheme, which he argued, if implemented, would provide sufficient safeguards. He submitted that the prohibition on assisted suicide should not apply where an individual is aged 18 and over; has been diagnosed with a terminal illness and has a clinically assessed prognosis of 6 months or less to live; has the mental capacity to make the decision; makes that decision in a voluntary, clear and settled manner; and retains the ability to undertake the final act. Additionally, two doctors must confirm that the individual meets the criteria, and permission for the provision of assistance must be authorised by a High Court judge. Previous challenges to the UK law on assisted dying, including Pretty and Nicklinson, had established that section 2 of the Suicide Act does engage individual’s Article 18 rights, but that such an interference could be justified under Article 8 of the ECHR, which permits interference ‘such as is in accordance with the law and necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country’. The question …. (shrink)

This year marks the 10th anniversary of the Female Genital Mutilation Act 2003.1 i The Act makes it an offence for any person to excise, infibulate or otherwise mutilate the whole or any part of a female's labia majora, labia minora or clitoris, or to aid, abet, counsel or procure the mutilation by another person. The exception is where a surgical or obstetric procedure is clinically indicated. There has long been UK legalisation against female genital mutilation but the 2003 Act (...) extended the criminal offence to UK nationals and permanent residents who are overseas, including in countries where the practice is legal. A person found guilty of an offence under the Act can be imprisoned for up to 14 years.Precise figures for the number of girls and women who have undergone, or who are at risk of FGM, in the UK, are hard to establish because of the secrecy surrounding the practice. It is estimated, however, that over 21 000 girls under the age of 15, in England and Wales, are at high risk of FGM.2 Despite this prevalence, recent clinical and policy guidelines3,4 and the legislative framework to prosecute, there have been no prosecutions for FGM in the UK. Worryingly, there is a suggestion that some girls are being brought to the UK for FGM, as the UK is seen as having ‘fewer controls’ and ‘less awareness about FGM’. A recent quote in the BMJ noted ‘People from many countries in Europe go to the UK for this purpose’.5In response to the lack of prosecutions, in November 2012, the Crown Prosecution Service launched an action plan for improving prosecutions. Action points include: gathering more robust data on allegations of FGM; raising with Ministers what the existing reporting …. (shrink)

Legal battles continue in the UK over the Government’s plans to transport asylum seekers arriving on British shores to Rwanda in East Africa. Originally announced as a system for ‘processing’ asylum seekers, the Government has subsequently made it clear that there would not be an option for asylum seekers to return to the UK. The arrangement forms part of a deal between the UK and Rwanda, with the UK promising to invest £120 m in economic growth and development in Rwanda, (...) along with financing the cost of the ‘offshored’ asylum operation.1 The Government states that the policy is designed to break the business model of people traffickers involved in facilitating hazardous trips across the Channel in small, overcrowded and unseaworthy craft, leading to multiple drownings. Critics argue that the policy will do nothing to stop desperate people from seeking refuge in the UK, that transferring already traumatised people to Rwanda – which has been criticised for its human rights record – is inhumane and potentially outwith international law. Medical bodies, including the BMA, along with refugee organisations have expressed serious concerns about the health impact of such a system of ‘offshoring’. An equivalent system in Australia has been notorious for the devastating health impacts on those ‘offshored’ to the Pacific islands of Manus and Naura. Unusually in the UK the offshoring proposals have been greeted by unanimous condemnation by the Church of England. The lawfulness of the process is also subject to question. On the 14 July, a plane carrying a small number of asylum seekers to Rwanda was halted shortly before take-off following an intervention by the European Court of Human Rights. The ECtHR, part of the Council of Europe, of which the UK is still a member, said an Iraqi man known as KN faced ‘a real …. (shrink)

In previous Ethics briefings 1 we have highlighted the developments in the case of Bell & Another v the Tavistock and Portman NHS Foundation Trust. The case concerned a judicial review of the practice of prescribing puberty blocking treatment to children and young people at the Gender Identity Development Service managed by the Tavistock and Portman NHS Foundation Trust. The Court of Appeal in its judgement2 found the Trust’s practices to be lawful, and overturned previous guidance given by the High (...) Court which had contradicted the 'Gillick principle' regarding whether a child or young person could consent to medical treatment, without the consent of its parent. Despite this legal success, concerns over the GIDS continued. In September, NHS England commissioned an independent and wide-ranging review of gender identity services for children and young people led by Dr Hilary Cass, past president of the Royal College of Paediatrics and Child Health. Dr Cass’s Interim review, published in March,3 has resulted in a decision by NHS England to close the GIDS at the Trust by Spring 2023, and replace it with regional centres at existing children’s hospitals offering more 'holistic care' with ’strong links to mental health services’. It is proposed that regional centres will be established at Great Ormond Street Hospital, and Alder Hey Children’s NHS Foundation Trust. Dr Cass was critical of the clinic’s failure to collect sufficient data on the impact of puberty blockers in under-16s. …. (shrink)

In April 2014, the European Parliament agreed the final text on a new EU Clinical Trials Regulation.1 The Regulation replaces the EU Clinical Trials Directive, which has long been criticised by various stakeholders for creating unnecessary bureaucracy and blamed, at least in part, for increased costs, time delays and a drop in clinical trial applications. The new Regulation seeks to remedy the faults of the previous legislation and make the EU an attractive place to conduct clinical trials.The Regulation aims to (...) streamline and harmonise the administrative procedures for clinical trial approvals but without compromising the safety of participants. A particular focus is placed on the importance of enabling trials in multiple or all member states, recognising that there is an increasing need to target ever more specific patient populations and the challenge this represents in recruiting sufficient numbers of participants to research studies. A new, two-part application process, designed to avoid the multiple submission of identical data is therefore to be introduced. Member states cooperate on certain aspects of trial approval but issues which are subject to specific national regulations will continue to be approved by individual countries. All applications will be submitted through a new EU portal, which will be set up and managed by the European Medicines Agency. The new process also takes a risk-based approach to some types of research study. Trials to test medicinal products that already have a marketing authorisation are classed as ‘low intervention trials’ and are subject to less stringent requirements.The ethical safeguards in the new Regulation remain similar to those in the 2001 Directive. A positive appraisal from a research ethics committee remains a prerequisite for a trial to be approved. Member …. (shrink)

In August 2012, the drug manufacturer, Fresenius Kabi, barred the sale of the anaesthetic, propofol, for use in lethal injections. The company announced that it would not accept orders for the drug from US departments of correction, and put in place similar requirements on all its wholesalers and distributors.1Propofol is one of the world's most widely used anaesthetics. Earlier in 2012, US states began to use propofol in executions following shortages of other drugs which had previously been used in lethal (...) injections. In May 2012, the state of Missouri decided to move to a one-drug protocol, using propofol alone for lethal injections, in place of the three-drug protocol that had been used by most states carrying out the death penalty. Missouri took this decision when supplies of thiopental sodium and pentobarbital, drugs used in the three-drug protocol, became unavailable.2Fresenius Kabi said that it had imposed the restrictions in order to ‘prevent Propofol from being used for purposes other than its approved medical indications’ and to ensure that ‘the immediate access to Propofol needed by medical professionals’ was not hindered. The company said that it objected to the use of its products in any manner that was not in full accordance with the medical indications for which they have been approved by health authorities.3 All forms of Fresenius Kabi propofol are manufactured in Europe. A European Union Council regulation prevents products that may reasonably be expected to be used in executions from being exported from the EU. The company said that, should propofol begin to be used in executions in the USA, inadequate access to the drug in the country was a likely consequence. At the time of writing, the US Food and Drug Administration was reporting shortages of the drug in the USA for …. (shrink)

On 7 April 2022 – coinciding with World Health Day – the British Medical Association launched its new report, Health and human rights in the new world order.1 Written during the global upheaval triggered by the COVID-19 pandemic, and published just weeks after the Russian invasion of Ukraine, the report responds to a range of emerging and intensifying threats to health-related human rights globally. As the report establishes, human rights in health and healthcare matter because human suffering, and its relief, (...) are fundamental moral issues. As relief of human suffering is the primary purpose of medicine, it follows that doctors and other health professionals are often active in times of human challenge and extremity. During conflict, humanitarian crises, and, as we have so recently seen, global public health emergencies, health professionals are essential to the response. But these crises – and the response to them – can put fundamental human rights and interests under pressure. The Russian invasion of Ukraine has seen sustained indiscriminate shelling of civilian infrastructure. Whether health facilities were directly targeted is moot – the indiscriminate nature of the assault means they will inevitably be hit. Not only is this a violation of the Geneva Conventions, it undermines fundamental human rights, not least of which the right to health. Destroying health infrastructure drives further suffering and delays post-conflict recovery. Public heath emergencies can rightly require draconian measures – social distancing, enforced isolation, location tracking, economic shutdown. Although we saw their necessity during the COVID-19 outbreak, concerns were raised about disproportionate restrictions on basic rights, including rights to privacy and liberty. Human Rights Watch drew attention to the way governments unlawfully exploited COVID-19 to crack down on fundamental rights.2 Although conflicts and public health emergencies are not new, the report also tracks a number of …. (shrink)

In parts of the world, discussion regarding COVID-19 has shifted towards endemicity, and questions of living with, rather than directly battling, the virus. As a result, ethical questions are being refocussed. The imperative is beginning to shift towards what we can learn from the pandemic, and how we can better prepare for future global outbreaks. Among the questions that need to be addressed is what Covid-29 has taught us about how research can be conducted ethically during major global public health (...) emergencies. It is widely accepted that research has an essential role to play in improving the effectiveness of health interventions in major public health crises.1 Even before COVID-19, a special series published in The Lancet highlighted the critical role of research in humanitarian crises, and lamented the paucity of good data on the effectiveness of health interventions in these particularly demanding contexts.2 The impact of expedited vaccine research on the mortality, morbidity and global disruption of the COVID-19 pandemic would be difficult to exaggerate. But it is clear that one important driver of vaccine hesitancy was public concern about the speed with which research into the vaccines was undertaken and hence the reliability of the data concerning their safety.3 Although for understandable reasons, the focus of attention on ethical research during the COVID-19 pandemic has been on vaccines and anti-virals, research in public health emergencies involves a wide range of activities designed to generate evidence, including social science research – which can be particularly critical in understanding barriers to vaccine uptake for example – along with epidemiological studies and health systems research. One widely acknowledged area of ethical tension concerning research in public health emergencies is between the need for rapid ethical review, and the strong moral requirement …. (shrink)

In a recent judgment1 the Court of Protection was highly critical of health professionals for continuing to provide clinically-assisted nutrition and hydration in the face of disagreement about the patient’s best interests, without seeking to resolve the issue. This hearing had been set up specifically to consider whether GU’s dignity had been properly protected, and if not why not, given concerns raised by the Official Solicitor about what she considered to be “a complete abrogation of responsibility to consider properly or (...) at all, and to determine whether it was in GU’s best interests and therefore lawful to continue to give him an invasive medical treatment, CANH.” In April 2014, at 63 years old and living in Thailand, GU sustained severe injuries after suffering from an electrocution accident. He sustained a cardiorespiratory arrest with a significant delay before cardiopulmonary resuscitation was started and was unconscious and unresponsive. In September 2014 he was transferred to the UK. In August 2018, GU’s brother made a request for a best interests decision concerning the continuation of CANH. The family met to discuss this and all except GU’s son, agreed that continuing CANH was not in GU’s best interests. In view of the fact that there was not unanimity among the family, a decision was made that CANH should continue. Commenting on this decision, Mr Justice Hayden said ‘the apparent assumption that in the face of family disagreement ‘ therefore will continue to be cared for by nursing staff ” is a troubling non sequitur’ and stressed that ‘family dissent to a medical consensus should never stand in the way of an incapacitated patients’ best interests being properly identified’. He also made clear that the responsibility for ensuring that a best interests assessment is undertaken rests with the …. (shrink)

The office of the United nations high commissioner for human rights (OHCHR): serious human rights abuses against the Uyghur people in Xinjiang, China Very close to midnight on the 31 August 2022, minutes before Michelle Bachelet’s four-year term as UN Commissioner for Human Rights came to an end, her office finally succeeded in publishing her long-delayed report into serious human rights violations in the Xinjiang province in China. According to The Guardian newspaper, papers leaked in July of the same year (...) showed sustained efforts by China to prevent the report’s release, and Bachelet has subsequently spoken of the intense pressure she was put under by the Chinese to prevent the report’s publication. 1 The report is sobering. 2 It is explicit that the Peoples’ Republic of China (PRC) has committed systematic violations of fundamental human rights against the Uyghur and other Turkic Muslim minorities in Xinjiang... (shrink)

On 26 February 2019, the Organ Donation Bill completed its passage through the Westminster Parliament, creating the legislative basis to introduce an opt-out system for organ donation in England. The Bill now awaits Royal Assent, following which it is anticipated that the new system will come into effect in spring 2020. In the intervening period, there will be a significant publicity campaign to inform the public about the change in the law and the options open to them, which are to: (...) The family will continue to be consulted and as an additional safeguard, will be able to provide information about any unregistered objections held by the individual before they died. The legislation follows a similar model to that which was introduced in Wales on 1 December 2015. While it is too early to draw firm conclusions from the experience in Wales, the early signs are positive. The latest full-year data show an increase from 61 to 74 deceased donors over the previous 12 months;1 and in the first three-quarters of 2018/2019, there have been 72 deceased donors.2 Given the number of donors is small and subject to natural variation year-on-year, National Health Service Blood and Transplant has been analysing cumulative data to identify …. (shrink)

In December, the National Data Guardian 1 for health and care in England, Dame Fiona Caldicott, published the outcomes of a public consultation about the Caldicott Principles and the role of Caldicott Guardians.1 The Caldicott Principles are good practice guidelines which have been used by health and social care organisations in the UK since 1997 to ensure that people’s data are kept safe and used in an ethical way.2 The role of the Caldicott Guardian is well-established in the UK. Caldicott (...) Guardians are senior people which support the upholding of the Caldicott Principles within organisations. In response to views expressed during the consultation the NDG has added an eighth Caldicott Principle to the existing seven and will use her statutory powers to issue guidance about the appointment of Caldicott Guardians for health and adult social care organisations. The new eighth Caldicott Principle is: ‘Inform patients and service users about how their confidential information is used’. It provides that: > A range of steps should be taken to ensure no surprises for patients and service users, so they can have clear expectations about how and why their confidential information is used, and what choices they have about this. These steps will vary depending on the use: as a minimum, this should include providing accessible, relevant and appropriate information - in some cases, greater engagement will be required. The NDG explains that the introduction of the new principle was prompted by consideration of the role that the legal concept of ‘reasonable expectations’ should play in shaping the circumstances under which health and care data may be legitimately shared. The NDG does not envisage that this principle will establish reasonable expectations as a legal basis in its own right …. (shrink)