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)

Psychiatry uncomfortably spans biological and psychosocial perspectives on mental illness, an idea central to Engel's biopsychosocial paradigm. This paradigm was extremely ambitious, proposing new foundations for clinical practice as well as a non-reductive metaphysics for mental illness. Perhaps given this scope, the approach has failed to engender a clearly identifiable research programme. And yet the view remains influential. We reassess the relevance of the biopsychosocial paradigm for psychiatry, distinguishing a number of ways in which it could be (re)conceived.

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...) the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

With contributions from psychiatry, psychology, neuroscience, and philosophy, this book provides the most comprehensive account to date of the interplay between biological, psychological, and social factors in mental health and their ethical dimensions.

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

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)

In May 2011, more than a decade after the International Association of Athletics Federations (IAAF) and the International Olympic Committee (IOC) abandoned sex testing, they devised new policies in response to the IAAF's treatment of Caster Semenya, the South African runner whose sex was challenged because of her spectacular win and powerful physique that fueled an international frenzy questioning her sex and legitimacy to compete as female. These policies claim that atypically high levels of endogenous testosterone in women (caused by (...) various medical conditions) create an unfair advantage and must be regulated. Against the backdrop of Semenya's case and the scientific and historical complexity of ?gender verification? in elite sports, we question the new policies on three grounds: (1) the underlying scientific assumptions; (2) the policymaking process; and (3) the potential to achieve fairness for female athletes. We find the policies in each of these domains significantly flawed and therefore argue they should be withdrawn. (shrink)

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

In 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 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)

First Published in 2002. Routledge is an imprint of Taylor & Francis, an informa company.

### 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)

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)

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)

While risk of harm is an important focus for whether clinical research on humans can and should proceed, there is uncertainty about what constitutes harm to a trial participant. In Phase I trials on healthy volunteers, the purpose of the research is to document and measure safety concerns associated with investigational drugs, and participants are financially compensated for their enrollment in these studies. In this article, we investigate how characterizations of harm are narrated by healthy volunteers in the context of (...) the adverse events they experience during clinical trials. Drawing upon qualitative research, we find that participants largely minimize, deny, or re-attribute the cause of these AEs. We illustrate how participants' interpretations of AEs may be shaped both by the clinical trial environment and their economic motivation to participate. While these narratives are emblematic of the larger ambiguity surrounding harm in the context of clinical trial participation, we argue that these interpretations also problematically maintain the narrative of the safety of clinical trials, the ethics of testing investigational drugs on healthy people, and the rigor of data collected in the specter of such ambiguity. (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)

In August, Amnesty International and the World Medical Association expressed concern at reports that a judge in Saudi Arabia had asked several hospitals in the country whether they could perform an operation to damage a man's spinal cord as punishment for attacking another man and leaving him paralysed. The man had already been sentenced to seven months imprisonment for the crime, the injured victim requested the further sentence under Sharia Law, which is strictly enforced across Saudi Arabia. According to reports, (...) one of the hospitals approached declined on ethical grounds. Another hospital stated that it was possible to damage the spinal cord in the way requested, but that the procedure would have to be done at a specialised hospital. 1In its statement, Amnesty International urged the authorities not to carry out the sentence, which it argued would be a grave violation of international human rights law and contravene the United Nations convention against Torture, to which Saudi Arabia is a state party. 2 The WMA expressed its support for the physicians who refused to carry out the request by the Saudi court, participation in which would constitute a severe breach of medical ethics. 3 The WMA reminded doctors that the Declaration of Tokyo clearly states that no physician should participate in the practice of torture or any other forms of cruel, inhuman or degrading procedures, whatever the offence of which the victim of such procedures is suspected, accused or guilty of. The Declaration also includes a prohibition of participation in the planning or advising for such a procedure. NHS white paperIn July 2010 the government published a White Paper outlining its plans to transform the delivery of National Health Services in England. 4 The White Paper has been described as ‘one of the biggest shake ups of the health system …. (shrink)

Proponents of fetal rights argue that, from the moment of conception, a fetus has significant human rights. There are degrees of opinion, however, about the scope of those rights, with some arguing that, in certain circumstances, such as where the conception is the result of rape, the mother's rights predominate. Others argue that the fetus' rights are absolute and should override the woman's right to life and health so that pregnancies cannot be terminated, even to save women's lives. Various countries (...) explicitly or implicitly recognise the status of the fetus as a separate person with varying degrees of rights. For example, the Irish Constitution recognises the ‘right to life of the unborn’ and the 2004 US Unborn Victims of Violence Act views violence against a pregnant woman as a crime against two people, one of whom is the child in utero. The 1969 American Convention on Human Rights has been signed by most Latin American countries and recognises full human rights as applying from conception. In the UK, the fetus has no legal rights but it is widely agreed that the closer a fetus is to being capable of independent existence outside the womb, the greater the moral obligations owed to it. This is reflected in the abortion law only permitting termination of a pregnancy at the later stages in restricted circumstances.In Brazil, the issue of fetal rights was highlighted in May 2010 when a Bill was put forward which aimed to give the fetus priority in law and to make illegal any act or omission that could have a negative impact on it. The bill proposes that the family, society and the …. (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)