The rubber hand paradigm is used to create the illusion of self-touch, by having the participant administer stimulation to a prosthetic hand while the Examiner, with an identical stimulus , administers stimulation to the participant’s hand. With synchronous stimulation, participants experience the compelling illusion that they are touching their own hand. In the current study, the robustness of this illusion was assessed using incongruent stimuli. The participant used the index finger of the right hand to administer stimulation to a prosthetic (...) hand while the Examiner used a paintbrush to administer stimulation to the participant’s left hand. The results indicate that this violation of tactile expectations does not diminish the illusion of self-touch. Participants experienced the illusion despite the use of incongruent stimuli, both when vision was precluded and when visual feedback provided clear evidence of the tactile mismatch. (shrink)

The nonvisual self-touch rubber hand paradigm elicits the compelling illusion that one is touching one’s own hand even though the two hands are not in contact. In four experiments, we investigated spatial limits of distance and alignment on the nonvisual self-touch illusion and the well-known visual rubber hand illusion. Common procedures and common assessment methods were used. Subjective experience of the illusion was assessed by agreement ratings for statements on a questionnaire and time of illusion onset. The nonvisual self-touch illusion (...) was diminished though never abolished by distance and alignment manipulations, whereas the visual rubber hand illusion was more robust against these manipulations. We assessed proprioceptive drift, and implications of a double dissociation between subjective experience of the illusion and proprioceptive drift are discussed. (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)

Inattentional blindness studies have shown that an unexpected object may go unnoticed if it does not share the property specified in the task instructions. Our aim was to demonstrate that observers develop an attentional set for a property not specified in the task instructions if it allows easier performance of the primary task. Three experiments were conducted using a dynamic selective-looking paradigm. Stimuli comprised four black squares and four white diamonds, so that shape and colour varied together. Task instructions specified (...) shape but observers developed an attentional set for colour, because we made the black–white discrimination easier than the square–diamond discrimination. None of the observers instructed to count bounces by squares reported an unexpected white square, whereas two-thirds of observers instructed to count bounces by diamonds did report the white square. When attentional set departs from task instructions, you may fail to see what you were told to look for. (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)

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 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)

### 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)

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)

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)

A simple experimental paradigm creates the powerful illusion that one is touching one’s own hand even when the two hands are separated by 15 cm. The participant uses her right hand to administer stimulation to a prosthetic hand while the Examiner provides identical stimulation to the participant’s receptive left hand. Change in felt position of the receptive hand toward the prosthetic hand has previously led to the interpretation that the participant experiences self-touch at the location of the prosthetic hand, and (...) experiences a sense of ownership of the prosthetic hand. Our results argue against this interpretation. We assessed change in felt position of the participant’s receptive hand but we also assessed change in felt position of the participant’s administering hand. Change in felt position of the administering hand was significantly greater than change in felt position of the receptive hand. Implications for theories of ownership are discussed. (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)

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)

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 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)

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)

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)

People acquire new beliefs in various ways. One of the most important of these is that new beliefs are acquired as a response to experiencing events that one did not expect. This involves a form of inference distinct from both deductive and inductive inference: abductive inference. The concept of abduction is due to the American pragmatist philosopher C. S. Peirce. Davies and Coltheart elucidated what Peirce meant by abduction, and identified two problems in his otherwise promising account requiring solution (...) if that account were to become fully workable. Here we propose solutions to these problems and offer an explicit cognitive model of how people derive new beliefs from observations of unexpected events, based on Peirce's work and Sokolov's ideas about prediction error triggering new beliefs. We consider that this model casts light not only upon normal processes of belief formation but also upon the formation of delusional beliefs. (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)

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)