Martin Davies

### 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 …

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 …

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 …

### Marris Bill In June 2015, Labour Member of Parliament (MP) Rob Marris, who topped the ballot for private members’ bills, introduced the Assisted Dying (No. 2) Bill (‘the Marris Bill’) into the House of Commons. The Marris Bill was nearly identical to the Falconer Bill debated in the House of Lords early in the year (Eth 20, 2014–2015), and would permit competent, terminally ill adults with a clear and settled intention to end their life to receive physician assistance to do so. Two doctors must be satisfied that the persons are terminally ill and are reasonably expected to die within 6 months, have the capacity (construed in accordance with the Mental Capacity Act 2005) and have a clear and settled intention to end their lives, which have been reached voluntarily, on an informed basis. The Marris Bill also included one of the amendments approved at Committee Stage of the Falconer Bill, which, in addition to the need for two doctors to be satisfied as to the eligibility criteria, would require all requests to be approved by a judge of the High Court (Family Division). Further to this, the Marris Bill included two new clauses: first, a requirement for High Court Judges to rule on requests within 14 days1 and, second, a requirement for any doctor with doubts about the capacity of a person requesting assistance to refer that person for assessment to ‘an appropriate specialist’.2 The Marris Bill received its second reading in the House of Commons on 11 September 2015, where it was overwhelmingly rejected by 330 votes to 118.3 A large number of those who opposed the Bill did so on the grounds that it had the potential to go beyond its limits and to pressurise the elderly and other vulnerable people, particularly those without family support, to consider …

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 …

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...

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 …

Re AA and Re P : the ‘forced caesarean’ caseOn 30 November 2013 The Telegraph reported that Essex County Council Social Services had obtained a High Court Order against a woman that allowed her to be forcibly sedated and her child removed by caesarean section and taken into care.1 The original story reported that the woman, an Italian national who had been in the UK on a short-term basis for work, had experienced ‘something of a panic attack’ and, after calling the police, was compulsorily detained under the Mental Health Act 1983. Five weeks later, the report said, she was restrained, forcibly sedated and awoke hours later to find that, pursuant to a court order obtained by Essex County Council Social Services, her baby had been removed by caesarean section and taken into care by social workers.The story was subsequently reported in a number of other media outlets and prompted such widespread outrage that the presiding judge, Mr Justice Mostyn, took the unprecedented step of releasing both the judgement of the initial application to the Court of Protection and the verbatim transcript of proceedings. It became apparent that the facts of the case had been drastically misreported by the media and that coverage had conflated two very separate issues: the medical procedure of the caesarean section and the taking of the child into local authority care.The initial case heard in the Court of Protection on 23 August 2012, Re AA,2 was the result of an application made not by the local authority or social workers seeking to remove the child but by Mid-Essex National Health Service Trust seeking a declaration and an order, on the basis of medical evidence, that the patient lacked capacity and that it would be in her best interests to undergo a caesarean section. Mr Justice Mostyn found in …

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

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 …

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 …

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 …