The semantically ambiguous nature of the sign and aspects of non-classicality of elementary matter as described by quantum theory show remarkable coherent analogy. We focus on how the ambiguous nature of the image, text and art work bears functional resemblance to the dynamics of contextuality, entanglement, superposition, collapse and decoherence as these phenomena are known in quantum theory. These quantumlike properties in linguistic signs have previously been identified in formal descritions of e.g. concept combinations and mental lexicon representations and have (...) been reported on in the literature. In this approach the informationalized, communicated, mediatized conceptual configuration—of e.g. the art work—in the personal reflected mind behaves like a quantum state function in a higher dimensional complex space, in which it is time and again contextually collapsed and further cognitively entangled. The observer–consumer of signs becomes the empowered ‘produmer’ creating the cognitive outcome of the interaction, while loosing most of any ‘classical givenness’ of the sign. These quantum-like descriptions are now developed here in four example aesthetic signs; the installation Mist room by Ann Veronica Janssens, the installation Sections of a happy moment by David Claerbout, the photograph The Falling Man by Richard Drew and the documentary Huicholes. The Last Peyote Guardians by Vilchez and Stefani. Our present work develops further the use of a previously developed quantum model for concept representation in natural language. In our present approach of the aesthetic sign, we extend to individual—idiosyncratic—observer contexts instead of socially shared group contexts, and as such also include multiple idiosyncratic creation of meaning and experience. This irreducible superposition emerges as the core feature of the aesthetic sign and is most critically embedded in the ‘no-interpretation’ interpretation of the documentary signal. (shrink)

There has been little previous scholarship regarding the aims, options and impact of ethics education on residential care‐givers. This manuscript details findings from a pragmatic cluster trial evaluating the impact of three different approaches to ethics education. The focus of the article is on one of the interventions, an immersive simulation experience. The simulation experience required residential care‐givers to assume the profile of elderly care‐recipients for a 24‐hr period. The care‐givers were student nurses. The project was reviewed favourably by a (...) university ethics committee, and participants provided informed consent. Data from six postsimulation experience focus groups were analysed thematically and three themes were identified: the experience of vulnerability, dignity in care and the organisation of care. Findings suggest that the immersive simulation experience had a powerful immediate impact as participants described epiphanous insights relating to their care experiences. It is suggested that reflecting on and recording epiphanous events has the potential to sustain ethical care practices. Further research is required to evaluate the impact of different ethics education interventions in different cultural contexts. Exploration is also required regarding the meaning and significance of care epiphanies, those “most delicate and evanescent of moments,” for the sustainability of ethical care. (shrink)

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

The need to re-establish public confidence in medicine's ability to regulate itself after a series of scandals remains a continuing challenge. In January 2001, the Lord Chief Justice of England and Wales summed up what he perceived as a radical change in public attitudes, noting that medical negligence litigation “was a disaster area” and complaints to the General Medical Council (GMC) were expected to rise to around 4,500 in 2001. Reflecting what he claimed were changing public expectations, he announced the (...) end of the courts' “presumption of beneficence” on the part of doctors. He criticised the judiciary's past deference to medical opinion and claimed that society was shifting its focus from concepts of duties to individuals' enforceable rights. This “move to a rights based society”, he said “has fundamentally changed the behaviour of the courts” and by reference to a number of recent major medico-ethical cases, highlighted how the courts rather than doctors appeared increasingly as the ultimate arbiters on questions of medical ethics. Media attention crystallised around two major issues which exposed flaws in self regulation: the unauthorised retention of organs from deceased patients and the implications of the Shipman case, in which a general practitioner, Harold Shipman was found guilty of murdering 15 of his patients. In May 2000, in his interim report on paediatric practice at Bristol Royal Infirmary, Professor Ian Kennedy drew attention to the fact that organs of deceased children had been retained without their parents' knowledge or consent. It soon became evident that this had been a common practice in other hospitals, both after coroners' postmortem examinations (which do not require relatives' permission) and so-called “hospital postmortems” (which do require such authorisation). The report noted that current law was confused and a detailed code of practice was needed to clarify the circumstances in which …. (shrink)

The election of George Bush heralded a shift to the right in American politics and with it the expectation of a more conservative approach to issues such as abortion. In an interesting twist, however, the Wisconsin Supreme Court has upheld a decision that has been described as potentially “coercive of abortion”. David Oakley, a father of nine children with four different mothers was found guilty of intentionally refusing to pay child support and was sentenced to three years in prison followed (...) by five years' probation. As a condition of his probation, Oakley cannot have any more children unless he demonstrates that he has the ability to support them and that he is supporting the children he already has. Failure to comply with the conditions of the probation would result in a further eight years' imprisonment. Oakley argued that the condition violated his right to procreate, since he was unlikely ever to be able to support all of his children, but his appeal was rejected. The majority decision held that, since the conditions were “not overly broad” and were “reasonably related to the person's rehabilitation”, the conditions of probation could legitimately impinge upon constitutional rights. In dissenting from the majority decision, Ann Walsh Bradley, J stated: “[b]ecause the condition is triggered only upon the birth of a child, the risk of imprisonment creates a strong incentive for a man in Oakley's position to demand from the woman the termination of her pregnancy. It places the woman in an untenable position: have an abortion or be responsible for Oakley going to prison for eight years”.1 One commentator has pointed out that, in this case, “one precept of rightwing politics–that the state should not pay for the upkeep of offspring irresponsibly acquired–has come into conflict with another: that normal healthy people should …. (shrink)

In March 2004, the European Court of Human Rights awarded Carol Glass and her son David 10 000 Euros compensation after doctors treated David contrary to his mother’s wishes, without a court order.1 Although dismissed by UK courts, the ECHR held that David’s article 8 right to privacy, and in particular his right to physical integrity, had been breached.Born in 1986, David Glass is severely mentally and physically disabled, requiring 24 hour care. In July 1998 after surgery to alleviate an (...) upper respiratory tract obstruction, David became critically ill and was put on a ventilator. Doctors thought he was dying. His condition improved briefly and he returned home only to be readmitted a few days later when doctors discussed the option of morphine to alleviate his distress. His mother refused, believing it would compromise his chance of recovery. She also made clear that she wanted David resuscitated if his heart stopped. Although the doctor managing David’s care noted the possible need for a court order in such cases of total disagreement, no order was sought. On 20 October 1998, diamorphine was administered to David and a DNAR notice placed on his medical notes. Relations between the Glass family and the doctors deteriorated rapidly, culminating in a fight in which two doctors were injured. Ms Glass applied unsuccessfully for a judicial review of the hospital’s decisions and was refused permission to appeal. Subsequently, the General Medical Council found the doctors innocent of serious professional misconduct and the Crown Prosecution Service declined to bring charges against them. Ms Glass then took her case to the European Court of Human Rights.The Glass family argued that when the dispute arose, the hospital should have involved the courts to clarify whether, despite his mother’s objections, the …. (shrink)

Ethics briefings have previously drawn attention to ethical questions raised by the use of paternity testing in “true life” entertainment programmes, including where the proper limits to the use of medical procedures and information as entertainment might lie.1 From a public health perspective the relationship between entertainment media and health is complex and interesting. In April 2001, for example, a storyline opened in the UK television soap opera Coronation Street in which a central character, Alma, developed cervical cancer and, within (...) six weeks, died. Although the potential for entertainment media to promote positive health messages is recognised,2 the effects of this particular storyline have yet to be fully understood. While public health medicine can take advantage of the extraordinary reach of the entertainment media— Coronation Street is broadcast four times a week and regularly attracts 13 million viewers an episode—the effects of this influence need to be carefully considered, particularly when, as in this case, the story was not designed to deliver a particular health message. Researchers have estimated that an additional 14 000 cervical smears were performed in England’s North West as a result of the Coronation Street storyline, 21% more than the previous year.3 It may be argued that this presents an example of the positive influence of the media on health education and service uptake, although the reality is complicated. Of those estimated 14 000 additional smears, slightly less than 2500 were for women who were either overdue or had never had a smear test before.4 Although this resulted in a positive health benefit for the estimated 65 women who would otherwise not have had a “significant abnormality” detected, it did so at the cost of nearly 12 000 unnecessary or untimely smears. This increase in demand put considerable pressure on the service …. (shrink)

Two recent announcements have again triggered the perennial debate about altruism versus commercialism. In Israel, the health minister has reversed a ban on the import of ova, which will allow people to pay for human eggs, imported primarily from Romania. This is the first time the Israeli government has allowed the purchase of body tissue or parts for medical use. The decision was taken in response to a High Court challenge to the 6 month old prohibition, by women who were (...) unable to receive fertility treatment because of the shortage of donated eggs.1 In the United States, where payment for donated eggs is now fairly routine, attention has shifted to the possibility of paying for human organs for transplantation. The ethics committee of the American Society of Transplant Surgeons is reported to have recommended a pilot programme to pay the funeral expenses incurred by donating families.2 At the same time, a committee of the American Medical Association (AMA) had recommended that pilot studies be conducted to determine the effect of financial incentives for cadaveric organ donation on donation rate and on the values thought to be central to donation.3 It is expected that this issue will be revisited at the AMA's annual meeting in Chicago in June when the AMA's House of Delegates will vote on a revised Report to decide whether the proposal should become AMA policy. Those promoting this type of commercialism often acknowledge that principles are giving way to pragmatism, and that the weight of moral argument lies on the side of altruism. Interestingly, however, the AMA Report would have proposed a slightly different approach arguing that: “If policymakers, ethicists, or legislators prohibit the implementation of programs that could be shown to increase the number of available organs and reduce the number of deaths, …. (shrink)

Many societies and legal systems have to grapple with the reality that families are increasingly complex entities. In March 2002 a Scottish sheriff sought to define the basic principles behind the notion of “family”.1 She ruled that a lesbian couple cannot legally constitute a family unit for the purposes of an award of parental rights and responsibilities. The case concerned the best interests of an 18-month-old boy whose mother was in a lesbian relationship and whose biological father was a gay (...) man. The mother argued that her female partner should be awarded full parental rights since the father was simply a sperm donor for the lesbian couple who were the intended parents. He contested this and brought the case to court in order to obtain access to the child. The sheriff emphasised that the boy's interests were paramount, ruling that he should see his father, who was named as a parent on the birth certificate and who, the court said, should also be liable for his financial support. Gay rights campaigners welcomed this support for the parental rights of homosexual fathers but expressed concern about the rights of the mother's lesbian partner, opening up the concept of recognising multiple parents: possibly three or four. At present in the UK, mothers have parental responsibility for their children. In addition, fathers who are married to the child's mother also have automatic parental responsibility. The government intends to change the law to give unmarried fathers, who are named on a child's birth certificate, automatic parental responsibility. In Scotland, the parental rights of same sex couples may ultimately be decided by the Scottish parliament. This judgment contrasts with an earlier American court decision involving novel notions of parenthood. In January 2000, an English male couple were registered in the United States as the …. (shrink)

The availability of skilled doctors is both a necessary and an incontrovertible public good. How they should develop their skills, however, and what doctors and patients can reasonably expect in a teaching context, may raise ethical concerns. At some point, medical teaching must leave the classroom. Patients understandably expect doctors to be expert in any procedure they undertake, yet every doctor must have a “first time”. This conflict between the need to learn and the desire for the best available treatment (...) is not easily resolved. Without appropriate supervised practice, doctors are likely to be clumsy or inexpert when carrying out procedures that should be routine, and harms would inevitably result. In contrast, what constitutes a legitimate intrusion when a person is ill and vulnerable? Perhaps all members of society have a duty to participate in the teaching of doctors as all individuals are likely to need their skills in the future? Medical procedures need both technical expertise and communication skills. So, much can be done with mannequins and, with appropriate permission, cadavers, but at some point the transition to live patients is needed. Sometimes teaching medical techniques causes conflict between the need for students to learn and the need to protect patient autonomy. The utilitarian justifications that once governed teaching practice, holding that the net social benefit outweighed any harm to individual patients, are beginning to give way to a more rights based or deontological approach that sees individual autonomy as an almost inviolable good. Practice in the past may have failed to recognise or to heed the significance of patient choice and the importance of recognising, in Kant’s phrase, that patients are “ends in themselves”. It follows of course that patients are not being exploited as a “means” if they voluntarily consent. In turn however, this raises the issue …. (shrink)

We have previously drawn attention1 to evolving international research ethics and standards of care to be applied by Western researchers carrying out drug trials in developing countries. The non-provision in HIV vaccine trials of antiretroviral regimes to reduce mother-to-child transmission has been at the centre of debate. Some think that in its revised Helsinki Declaration,2 the World Medical Association (WMA) leaves the issue open to interpretation. The WMA says that “the benefits, risks, burdens and effectiveness of a new method should (...) be tested against those of the best current methods”. This can be read as supporting a universal standard of care regardless of the research location, to prevent exploitation of poor patients. In April 2002, however, the UK Nuffield Council on Bioethics published a thoughtful report arguing the contrary. While stressing the fundamental ethical principle that advantage must not be taken of the vulnerabilities created by poverty and poor resources, it said that insisting upon a universal standard of care was not the way to respect that principle. The Ethics of Research Related to Healthcare in Developing Countries, 3 argues that standards of care can vary and should be defined in consultation with local people. Recommending that externally funded research should provide the level of care that is averagely available in that setting, it also envisages exceptional cases where an even lower standard would be permissible for the control group. An example is where research is to demonstrate that the best locally available treatments are ineffective or harmful. The WMA has issued one clarification note regarding Helsinki. It may now consider another to define “best current methods”. In April 2002, South Africa dramatically reversed its AIDS policy, announcing universal access to AIDS prophylactics for mother-to-child transmission of HIV. Previously, President Mbeki and Health Minister Tshabalala-Msimang had been notoriously …. (shrink)

All international statements of human rights comprise a mixture of liberty rights (such as freedom of expression, freedom from unjustified arrest or detention) and positive claims to social support. In general, the latter have received far less attention than the former although this now seems set to change. The 1948 UN Universal Declaration of Human Rights included “the right to a standard of living adequate for health and wellbeing, including food … medical care and necessary social services” (article 25). In (...) the ensuing fifty years, however, this human right rarely seemed to be centre-stage even though it was reflected in the constitution of the World Health Organization (itself a specialised agency of the UN) which famously defined health as “a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity”. One of the reasons for the apparent dismissal of the notion of a right to health in much previous ethical debate has been that while such a right is clearly a good thing, what is actually entailed, whether it is practically deliverable and from whom has long remained unclear. Now, however, concrete guidance is gradually emerging, leading to increased emphasis on this area of human rights, not just by specialised human rights lawyers and pressure groups but also by ethicists and medical organisations. The Commonwealth Medical Association, working with the American Association for the Advancement of Science, recently completed a report on the meaning and content of “the right to health”. The British Medical Association (BMA) has also recently compiled a major report on how the interface between medicine and human rights is changing, devoting much attention to the right to health, a right to a minimum standard of health care and the concept of an ethical duty to respond to need.1 …. (shrink)

Management of prisoners on hunger strike has always been a contentious ethical issue. Two arguments are advanced. One is that the authorities and prison doctors have duties to save prisoners' lives. This can entail forcible feeding. The counterargument is that prisoners retain certain rights, including that of deciding when to refuse medical treatment and artificial nutrition. In some countries, practice involves respecting prisoners' refusal of food until they lose consciousness and then forcibly feeding the then incompetent person, on the grounds (...) of “best interests”. In the UK, the arguments came to a head in the 1970s when two Irish prisoners, the Price sisters, legally challenged the Home Office's right to force-feed in any case other than where refusal of food arose from a medical or psychiatric condition. It caused a furore and the earlier prison policy of involuntary feeding was overturned. In 1981, the wishes of hunger strikers, including IRA prisoner Bobby Sands, were respected and doctors supervised death-fasts in Northern Ireland. During the 1980s and 90s, the same arguments were used in response to mass hunger strikes in Spain, Morocco and South Africa. In Spain, where 60 political prisoners fasted, some regional judges ordered forcible feeding, while others allowed prisoners to fast. The debate about conflicting moral duties became highly political and in 1990 a Spanish doctor who began involuntary nutrition of hospitalised prisoners was assassinated. Nevertheless force-feeding continued until 1991 when the strike ended. In the same year, in South Africa, sophisticated protocols evolved which applied the concept of advance directives (binding advance refusals) to force-feeding. Since 1980, hunger strikes by political prisoners have been endemic in Turkey where well documented allegations of torture are common. In 1996, for example, 12 hunger-strike deaths occurred in prison. In December 2000, two types of hunger strike began: over 2000 protesters …. (shrink)

Many people gain much of their awareness of medicine and medical techniques from television. A regional survey in 1995, for example, indicated that local people primarily gained their understanding of postmortem examinations from television.1 The popularity of factual series based in hospitals and documentaries following an individual’s battle against illness illustrates the appeal of medicine as entertainment. But public knowledge does not come just from such serious portrayals. In the UK, fictional dramas and soap operas are increasingly seen as a (...) useful tool for raising public awareness of the human dilemmas involved—for example in coping with infertility or requests for euthanasia. Programme makers frequently turn to medical advisors to ensure that the scope and limitations of medicine are accurately reflected. Such collaboration between health and media professionals is generally perceived as positive. The medical dilemmas of fictional characters can contribute to better public understanding of conditions such as HIV. Ethical problems can arise, however, when real rather than fictitious cases are presented as entertainment and where some of those involved cannot consent. In June 2002, for example, the British Medical Association (BMA) complained about a sensationalist television chat show’s call for volunteers to undergo paternity testing as part of the entertainment. For one of the programmes in the series, Trisha Exposes Britain’s Biggest Love Rats (ITV, 17 Jun 2002) men who doubted their paternity of a young child were invited to air their concerns in front of an audience, with a paternity test being carried out either to confirm or deny their suspicion. Such use of genetic technology for entertainment is far from the responsible attitude espoused by the BMA and the Human Genetics Commission (HGC). Official guidance in the UK emphasises that paternity testing should only be carried out after careful consideration of the significance and possible irrevocable …. (shrink)

A question increasingly arising in jurisdictions that permit assisted dying concerns the possibility of extending the rules for competent adults to allow doctors to help children or adults with impaired capacity to die. In a previous briefing, we drew attention to the Dutch “Groningen protocol”,1 which set out five criteria for the provision of euthanasia to incurably ill babies. Public debate on the protocol in 2005 forced the Dutch government to confront the issue of suffering in babies with incurable conditions. (...) Euthanasia for adults has been legal in Holland since 2001, but providing assisted dying to children under the age of 12 years was prohibited. Despite this, child euthanasia was reportedly taking place, but only a few cases were reported under the rules regulating adult-assisted deaths. It was estimated that each year, at least 15 seriously ill babies were illegally helped to die with their parents’ consent. The Groningen University Medical Centre stated that it had begun reporting cases of euthanasia in babies with spina bifida in 2002.2 As a result, a Dutch committee was established to implement the Groningen protocol and formally regulate euthanasia in young children. It began work in March 2006. This made Holland the first country to permit child euthanasia. Opponents of euthanasia saw the establishment of the committee as proof of a “slippery slope”, whereas supporters saw it as bringing greater openness to a practice that previously occurred in secret.Belgium legalised euthanasia in May 2002. It can legally be provided only to competent adult patients with untreatable medical conditions that entail unbearable physical suffering or mental agony. Patients must make voluntary, well-considered and repeated requests for their lives to be ended. This rule was challenged in February 2006 by …. (shrink)

A question increasingly arising in jurisdictions that permit assisted dying concerns the possibility of extending the rules for competent adults to allow doctors to help children or adults with impaired capacity to die. In a previous briefing, we drew attention to the Dutch “Groningen protocol”,1 which set out five criteria for the provision of euthanasia to incurably ill babies. Public debate on the protocol in 2005 forced the Dutch government to confront the issue of suffering in babies with incurable conditions. (...) Euthanasia for adults has been legal in Holland since 2001, but providing assisted dying to children under the age of 12 years was prohibited. Despite this, child euthanasia was reportedly taking place, but only a few cases were reported under the rules regulating adult-assisted deaths. It was estimated that each year, at least 15 seriously ill babies were illegally helped to die with their parents’ consent. The Groningen University Medical Centre stated that it had begun reporting cases of euthanasia in babies with spina bifida in 2002.2 As a result, a Dutch committee was established to implement the Groningen protocol and formally regulate euthanasia in young children. It began work in March 2006. This made Holland the first country to permit child euthanasia. Opponents of euthanasia saw the establishment of the committee as proof of a “slippery slope”, whereas supporters saw it as bringing greater openness to a practice that previously occurred in secret.Belgium legalised euthanasia in May 2002. It can legally be provided only to competent adult patients with untreatable medical conditions that entail unbearable physical suffering or mental agony. Patients must make voluntary, well-considered and repeated requests for their lives to be ended. This rule was challenged in February 2006 by …. (shrink)

When children have a life threatening illness, parents are often prepared to consider any measure that could save them. Having another child who could donate bone marrow or other cells may be a lifesaver. In December 2001 the UK Human Fertilisation and Embryology Authority (HFEA) decided in principle to allow HLA (human leukocyte antigen) typing to be used with preimplantation genetic diagnosis (PGD) for serious genetic disease. Parents at risk of transmitting genetic diseases could use PGD, not only to select (...) embryos free of disease, but also to choose those with the best tissue match to the dying sibling. The HFEA’s agreement to selection by HLA typing was subject to strict conditions1 and each individual request must be considered by the HFEA. In the following months, the HFEA considered two applications, it approved one and the other (for a non-genetic condition) it rejected. Interestingly, both decisions attracted criticism, the first for being too liberal and the second for being too conservative. The first case concerned Zain Hashmi who had beta thalassaemia. His parents wanted PGD to avoid the birth of another affected child and also to select embryos most likely to produce a baby who would be a compatible donor. They hoped to use stem cells from the umbilical cord blood to produce bone marrow for the transplant, thus the future child would not undergo any invasive, painful, or risky procedures. Approval was given by the HFEA for this case. In the second case, Charlie Whittaker had Diamond-Blackfan Anaemia (DBA), a rare life threatening blood disorder. Although some children with DBA inherit this condition from carrier parents, his parents were not actually carriers. Preimplantation genetic diagnosis was not needed, therefore, to avoid the birth of an affected child but the couple wanted it solely to provide …. (shrink)

The Netherlands has waited a long time for parliamentary endorsement of euthanasia, despite it being accepted practice for many years. Until recently, euthanasia and assisted suicide were technically illegal in the Netherlands, although court rulings during the 1970s and 80s indicated that a defence of necessity could be invoked by a doctor who ended the life of a patient. The situations in which that defence could be used were defined and became the Royal Dutch Medical Association's “rules of due care”. (...) Many of the safeguards in the rules passed into statute in April 2001 with the passing of the Termination of Life on Request and Assisted Suicide (Review Procedures) Act. The act decriminalised euthanasia and assisted suicide by doctors acting with “due care”. Doctors will not face prosecution if they terminate the life or assist in the suicide of a patient who has made a voluntary and well considered request, is facing “interminable and unendurable suffering”, understands his or her situation and prospects, and for whom there is no other reasonable solution. A second, independent, doctor must be consulted. There is no requirement for the patient to be terminally ill, and there are specific provisions that allow the euthanasia of young people between the ages of 12 and 16 if they and their parents agree. Parents of 16- and 17-year-olds must be involved in decisions about the young person's end-of-life care, but these patients are entitled to make their own decision. There is no requirement for the patient to be a Dutch resident. The Dutch justice department's website has the English language text of the act and an explanatory factsheet at www.minjust.nl:8080/a_beleid/fact/suicide.htm. In the light of the legislation, the World Medical Association (WMA) has reaffirmed its opposition to euthanasia and its strong belief that euthanasia is in conflict with …. (shrink)

BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and molecular (...) geneticists with expertise in carrier screening to explore their views on the implementation of ECS in the clinical setting.ResultsUsing inductive content analysis, we identified content categories relevant to the pre- and post-test settings. Participants believed ECS would ideally be targeted at couples before pregnancy. There was some disagreement regarding the acceptability of performing ECS in individuals, with several participants actively opposing individual-based screening. In addition, participants discussed the importance of ensuring informed and voluntary participation in ECS, recommending measures to minimize external pressure on prospective parents to undergo testing. A need for adequate counseling to foster informed, autonomous reproductive decision-making and provide support for couples found to be at risk was emphasized.ConclusionsPractical challenges in optimizing pre-test education and post-test counseling should not be underestimated and they should be carefully addressed before implementing ECS in the clinical setting. (shrink)

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

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

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

We explored the home learning environments of 173 Mexican preschool children in relation to their numeracy performance. Parents indicated the frequency of their formal home numeracy and literacy activities, and their academic expectations for children’s numeracy and literacy performance. Children completed measures of early numeracy skills. Mexican parent–child dyads from families with either high- or low-socioeconomic status participated. Low-SES parents reported higher numeracy expectations than high-SES parents, but similar frequency of home numeracy activities. In contrast, high-SES parents reported higher frequency (...) of literacy activities. Path analyses showed that operational numeracy activities were positively related to children’s numeracy skills in the high- but not in the low-SES group. These findings improve the understanding of the role of the home environment in different contexts and provide some insights into the sources of the variable patterns of relations between home learning activities and children’s numeracy outcomes. They also suggest that SES is a critical factor to consider in research on children’s home numeracy experiences. (shrink)

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

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

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)

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

The 2013 Rostock Symposium on Systems Biology and Bioinformatics in Aging Research was again dedicated to dissecting the aging process using in silico means. A particular focus was on ontologies, as these are a key technology to systematically integrate heterogeneous information about the aging process. Related topics were databases and data integration. Other talks tackled modeling issues and applications, the latter including talks focussed on marker development and cellular stress as well as on diseases, in particular on diseases of kidney (...) and skin. (shrink)

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

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

In 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)

The COVID-19 pandemic has forced developmental researchers to rethink their traditional research practices. The growing need to study infant development at a distance has shifted our research paradigm to online and digital monitoring of infants and families, using electronic devices, such as smartphones. In this practical guide, we introduce the Experience Sampling Method – a research method to collect data, in the moment, on multiple occasions over time – for examining infant development at a distance. ESM is highly suited for (...) assessing dynamic processes of infant development and family dynamics, such as parent-infant interactions and parenting practices. It can also be used to track highly fluctuating family dynamics and routines. The aim of the current paper was to provide an overview by explaining what ESM is and for what types of research ESM is best suited. Next, we provide a brief step-by-step guide on how to start and run an ESM study, including preregistration, development of a questionnaire, using wearables and other hardware, planning and design considerations, and examples of possible analysis techniques. Finally, we discuss common pitfalls of ESM research and how to avoid them. (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)