Immunology and its philosophy are a primary source for thinking about biological individuality. Through its discriminatory function, the immune system is believed to delineate organism and environment within one generation, thus defining the physiological individual. Based on the paradigmatic instantiations of immune systems, immune interactions and, thus, the physiological individual are believed to last only for one generation. However, in recent years, transgenerationally persisting immune responses have been reported in several phyla, but the consequences for physiological individuality have not yet (...) been explored. In this article, I will introduce an invertebrate immune system that is RNA-based and operates through a heritable silencing/licensing paradigm. I will discuss how such a perspective on immune systems can illuminate our conceptions of individuality. I will particularly introduce an account of immunological individuality that is not restricted to one generation. (shrink)

This paper introduces the reconstitutor as a comprehensive unit of heredity within the context of evolutionary research. A reconstitutor is the structure resulting from a set of relationships between different elements or processes that are actively involved in the recreation of a specific phenotypic variant in each generation regardless of the biomolecular basis of the elements or whether they stand in a continuous line of ancestry. Firstly, we justify the necessity of introducing the reconstitutor by showing the limitations of other (...) evolutionary conceptions of the unit of heredity, such as the replicator, the reproducer, and the Darwinian individual. We argue that these conceptions are based on the requirement of lineage formation, which we argue to be unnecessary for the existence of evolutionary heredity. In the second part, we introduce the reconstitutor, which we base on the concept of Stability of Traits, and illustrate how it covers cases of hereditary phenomena not covered by the previous accounts. Secondly, we illustrate how the reconstitutor could serve as a platform to rethink ecological inheritance and other forms of inheritance that have been recently introduced under the song/singer model of evolution. (shrink)

Since the ENCODE project published its final results in a series of articles in 2012, there is no consensus on what its implications are. ENCODE’s central and most controversial claim was that there is essentially no junk DNA: most sections of the human genome believed to be «junk» are functional. This claim was met with many reservations. If researchers disagree about whether there is junk DNA, they have first to agree on a concept of function and how function, given a (...) particular definition, can be discovered. The ENCODE debate centered on a notion of function that assumes a strong dichotomy between evolutionary and non-evolutionary function and causes, prevalent in the Modern Evolutionary Synthesis. In contrast to how the debate is typically portrayed, both sides share a commitment to this distinction. This distinction is, however, much debated in alternative approaches to evolutionary theory, such as the EES. We show that because the ENCODE debate is grounded in a particular notion of function, it is unclear how it connects to broader debates about what is the correct evolutionary frame- work. Furthermore, we show how arguments brought forward in the controversy, particularly arguments from mathematical population genetics, are deeply embedded in their particular disciplinary contexts, and reflect substantive assumptions about the evolution of genomes. With this article, we aim to provide an anatomy of the ENCODE debate that offers a new perspective on the notions of function both sides employed, as well as to situate the ENCODE debate within wider debates regarding the forces operating in evolution. (shrink)

Thought experiments play a role in science and in some central parts of contemporary philosophy. They used to play a larger role in philosophy of science, but have been largely abandoned as part of the field’s “practice turn”. This chapter discusses possible roles for thought experimentation within a practice-oriented philosophy of science. Some of these roles are uncontroversial, such as exemplification and aiding discovery. A more controversial role is the reliance on thought experiments to justify philosophical claims. It is proposed (...) that if we adopt an underlying empiricist view of concepts, then thought experiments can be seen as affording us contact with scientific practice, despite their seemingly a priori character. The advantages and drawbacks of thought experiments are discussed via comparison with case studies, on the one, and simulations on the other hand. The chapter closes with some remarks on how to combine thought experiments with other methods. (shrink)

Thought experiments play a role in science and in some central parts of contemporary philosophy. They used to play a larger role in philosophy of science, but have been largely abandoned as part of the field’s “practice turn”. This chapter discusses possible roles for thought experimentation within a practice-oriented philosophy of science. Some of these roles are uncontroversial, such as exemplification and aiding discovery. A more controversial role is the reliance on thought experiments to justify philosophical claims. It is proposed (...) that if we adopt an underlying empiricist view of concepts, then thought experiments can be seen as affording us contact with scientific practice, despite their seemingly a priori character. The advantages and drawbacks of thought experiments are discussed via comparison with case studies, on the one, and simulations on the other hand. The chapter closes with some remarks on how to combine thought experiments with other methods. (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)

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)

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)

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)

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)

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)

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)

Health, ethics and COP27 On the 20 November 2022, the United Nations Climate Change COP27 announced a breakthrough agreement to provide ‘loss and damage’ funding for resource-poor countries seriously affected by climate change. 1 The establishment of the funding stream acknowledges, and attempts to address, one of many thorny ethical issues driven by climate change – to what extent countries that have benefited economically from past emissions of greenhouse gases owe reparative obligations to countries who have contributed minimally to climate (...) change but are most at risk of its harms? One of the many reasons why this is such an important breakthrough is that it brings into the centre of climate policy-making questions of global – and intergenerational – justice and fairness. It acknowledges the critical importance of ethics in climate change deliberations. It is probably fair to say that climate change policy has been dominated to... (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)

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)

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)

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)

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)

At the time of writing, the UK Government’s ‘Illegal Migration Bill’1 had started progressing through the House of Commons. The Bill will enable the removal of people who have come to the UK seeking asylum by ‘illegal’ routes, including via the dangerous Channel crossing in small boats.2 That duty would apply whether a person makes a protection claim, human rights claim or is a victim of modern slavery or human trafficking. Asylum seekers risk crossing the Channel because there are very (...) few, if any, safe and lawful ways to reach the UK. At least 60% of the people who have made the crossing last year would be recognised as refugees through the asylum process.3 The Bill will also give the UK Secretary of State a follow up duty to deny people arriving by ‘illegal’ routes access to the asylum system and to permanently deny them legal status in the UK, this includes leave to remain and citizenship. On the 24 March, the Council of Europe Commissioner for Human Rights wrote to both Speakers of the UK parliament, stating ‘… the Bill would have serious consequences both for the rights of refugees, asylum seekers and migrants in the UK, and for the upholding of the UK’s international obligations more generally. The UNHCR [UN Refugee Agency] has already stated that the Bill is in clear breach of the UK’s obligations under the 1951 …. (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)

In December 2022, the Office of the National Data Guardian (NDG)1 for health and social care in England published new guidance: What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care.2 Research in the UK consistently demonstrates that for the public to consider a secondary use3 of health and care data appropriate and acceptable, it must deliver a benefit back to the public.4 The aim of the (...) guidance is to help organisations to interpret and demonstrate the public good from their work more comprehensively, accurately, and consistently. The guidance defines and standardises the concept of public benefit to enable clearer interpretation and understanding. It aims to support better public benefit evaluations by: As the guidance is underpinned by a detailed dialogue with the public on what counts as a public benefit, it is hoped that following it will …. (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 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)

An Amnesty International briefing, published in July 2020, highlights the grave risks health workers are facing globally, particularly in the face of the COVID-19 pandemic.1 The report uses data from 63 countries across the world from January to June 2020 and is rich with examples. While recognising that information about the pandemic is constantly evolving, and each country is in a separate phase of the outbreak, Amnesty International draws attention to several troubling trends. By virtue of the role undertaken by (...) health workers, they face a greater exposure to COVID-19, which has contributed to many of the concerns they now deal with. The briefing notes the evidence of the higher death rate from health workers compared with the general population in countries ranging from Denmark to Argentina, while also pointing out the significantly higher death rate in BAME health workers raised by the BMA in the UK.2 PPE shortages had been reported in nearly all of the 63 countries analysed. Many health workers globally stated that they had to buy their own PPE and others described cases of ‘improvisation’, when suitable PPE was not available, such as using bin bags or raincoats. Furthermore, health workers in several countries had experienced increases in workload with formal measures to extend health workers’ contracted hours passed in some countries as well as further changes to their terms and conditions of service. There were also reports of increased mental stress, particularly from those working in ICUs; the increased work and stress is not being matched with suitable compensation or remuneration. Despite many countries passing special benefits for health workers, it was commonly stated that these benefits had not been received yet or that they did not apply to all health workers, with cleaners and other lower-paid yet vital roles excluded. Deeply concerning …. (shrink)

At the time of writing the COVID-19 pandemic was entering its ninth month, with nearly 800 000 recorded fatalities and 22 million infections in 188 countries and territories.1 In previous ethics briefings2 we raised concerns about the possibility that demand for life-sustaining treatment would overwhelm supply, with a consequent requirement for health professionals to make challenging triage decisions. Fortunately, to date, these have largely not been realised, although there is a possibility that countries in which containment measures have been less-successful, (...) such as South Africa, may still be required to triage.3 Despite the successful ‘flattening of the curve’ in many countries, there is a wide consensus that we remain firmly within the pandemic. Enormous practical challenges remain. It is unclear whether the pandemic will ultimately take the form of two or more successive waves, or whether the patchwork of global responses will lead to a sustained slow ‘burn’ with sporadic flare-ups.4 Areas of uncertainty include whether infection confers some immunity, how long any such immunity might last, whether effective vaccines can be developed and if seasonal temperature fluctuations alter the spread of the virus. The pandemic will also be fundamentally shaped by the decisions that governments make and the extent to which their diktats are complied with by citizens. With the – possibly temporary – retreat of urgent clinical ethics issues, such as triage, opportunities have arisen to reflect on some of the ethical questions that underlie and structure the demanding policy decisions that governments are wrestling with. One of the early questions was how to balance the complex constellation of costs and benefits associated with lockdown. Countries that …. (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)

As the COVID-19 vaccine roll out continues apace, in the higher-income countries at least, concerns remain about the level of vaccine coverage in some health and social care settings. Although most countries have seen a relatively high uptake of vaccination against COVID-19 among staff, there continue to be some pockets of hesitancy. The risk of outbreaks in settings with potentially very vulnerable patients has led some governments across Europe to consider, or to introduce, measures compelling healthcare staff to be vaccinated. (...) The justifiability of mandating the vaccination of healthcare professionals is a longstanding question but it has come to the fore in recent months following a resurgence of cases of COVID-19 and the prevalence of the more transmissible Delta variant. In deciding whether the introduction of a mandate is appropriate, states have to balance a range of ethical and practical considerations. A voluntary approach, backed up with education, respects healthcare workers’ autonomy to make private healthcare decisions, which is valued highly in liberal democracies. However, healthcare professionals also have an obligation to ensure that they do not present a risk of harm to their patients. Similarly, healthcare providers have a responsibility to take appropriate steps to minimise the risk of infection. Alongside balancing these rights and responsibilities, governments must also consider the potential consequences and risks of enforcing vaccine uptake. For example, there are concerns that a coercive approach could deepen mistrust and resentment among people who are genuinely fearful or hesitant. Moreover, a large number of refusals and the subsequent imposition of sanctions, such as suspension or redeployment, could affect the ability of providers to staff necessary services. In the UK, Wales, Northern Ireland and Scotland have all ruled out the introduction of compulsory vaccination. However, in July, the English Parliament voted through …. (shrink)

### Challenge to the abortion act 1967 dismissed In September, the High Court dismissed a judicial review of the Abortion Act 1967 that sought a judgement of incompatibility with the European Convention on Human Rights.1 The case focused on a clause in the Act which permits abortion in England, Scotland and Wales after 24 weeks if there is a substantial risk that, if the child were born, it would suffer from ‘such physical or mental abnormalities as to be seriously handicapped’. (...) The case was brought by three parties: Heidi Crowter, a 24 year old woman living independently with Downs Syndrome and a campaigner for disability rights; a 2 year old boy with DS; and his mother who, when pregnant with him, felt pressure to terminate the pregnancy. The claimants sought a declaration that the clause was incompatible with the right to life; freedom from torture, inhuman or degrading treatment; right to private and family life; and protection from discrimination. Further to this it was also argued that the Act does not permit abortion on the basis that an unborn child has been diagnosed with a non-fatal fetal disability such as DS and that such abortions should not be funded by the state. In dismissing the claim, the judges focused on the ‘margin of appreciation’ that the European law allows domestic states on this issue and the fact that a foetus has never been deemed to have personhood status under the ECHR. The judges noted the ability to provide for a disabled child would vary significantly and that some conditions would only be found late in a pregnancy, after 24 weeks. Stating that the case by its nature did not permit the Court to hear from other perspectives, including women who may be affected by any change to the law and further criminalisation of abortion, the judges emphasised …. (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)

Previous Ethics briefings have charted the unprecedented developments in relation to the law on abortion in Northern Ireland this year,1 resulting in legislation being passed by the UK government that ‘decriminalised’ abortion in Northern Ireland, up to the point at which a fetus ‘is capable of being born alive’, from 22 October 2019. A new legal framework and supporting guidelines on abortion are now set to be introduced by 31 March 2020—which should reflect the recommendations in the 2018 United Nations’ (...) Committee on the Elimination of Discrimination against Women report on abortion in Northern Ireland.2 ### Interim guidance In anticipation of this period between decriminalisation and the introduction of a new legal framework, on 7 October 2019 the UK government’s Northern Ireland Office published interim factual guidance for healthcare professionals on their responsibilities to patients in light of these changes.3 Among other things, the guidance notes that there are no plans for additional services to be routinely available in Northern Ireland before 31 March 2020. There will, however, be fewer restrictions on which women in Northern Ireland can access funded abortion services in England via the Central Booking Service—doctors should direct women to this service.4 If healthcare professionals do offer additional abortion services in Northern Ireland itself ‘they should do so in line with their professional competence and guidance from their professional body’. The guidance recognises that some women may still purchase drugs that cause abortions online during this interim period. The difference now is that should a woman require medical assistance as a result, there is no obligation on healthcare professionals to report the woman to the police as abortion, in these circumstances, is not a crime. Previously, under section 5 of the Criminal Law Act 1967 a legal duty, unique to Northern Ireland, was placed …. (shrink)