Van der Pijl et al outline data suggesting an alarmingly high incidence of violation of the bodily integrity of patients in labour, including episiotomies performed without patients’ consent, or over their explicit objection.1 Similar data have been reported from the USA and Canada.2 The authors appropriately conclude that explicit consent is required at the time of all invasive obstetrical procedures, including episiotomy. Commonsense adjustments to the duration and detail of consent under conditions of clinical urgency are appropriate and should be (...) familiar to any clinician involved in perinatal care, as well as non-obstetric proceduralists caring for acutely ill patients. However, complete omission of consent for any of these procedures is both disrespectful to patients’ autonomy and strongly associated with morbidity from birth-related psychosocial trauma.3–5 The true incidence of obstetrical procedures performed without patients’ consent is difficult to determine for multiple reasons, including sample selection, recall bias and patients’ reluctance to reengage with traumatic experiences; however, …. (shrink)

In the past, a vast majority of medical assistance in dying patients were elderly patients with cancer who are not suitable for organ donation, making organ donation from such patients a rare event. However, more expansive criteria for MAiD combined with an increased participation of MAiD patients in organ donation is likely to drastically increase the pool of MAiD patients who can serve as organ donors. Previous discussions of ethical issues arising from these trends have not fully addressed difficulties involved (...) in separating decision to end one’s life from the one to donate one’s organs. However, realities of organ donation logistics and human decision making suggest that this separation can be extraordinary difficult. The need to maximise quality of donated organs complicates dying experience of the donor and is likely in tension with the dying experience the patient envisioned when first considering MAiD. Furthermore, the idea that patients will think about MAiD first, and only when firmly decided to end their life, consider organ donation, runs contrary to organ donation policies in some countries as well as end of life and everyday decision making. This opens the door for organ donation to serve as an incentive in MAiD decisions. Dispensing with the simplistic assumption that organ donation can never be a factor in MAiD decisions is, therefore, essential first step to properly addressing ethical issues at hand. (shrink)

Regulatory offences are a complex phenomenon, presenting problematic aspects both at the level of criminalisation and at the level of enforcement. The literature abounds in works that study the phenomenon. There is, however, an aspect that has remained largely unexplored. It concerns the relationship between the regulatory framework within which the crime occurs and the procedural safeguards that defendants normally enjoy at trial or at the pre-trial stage: defendants tried for regulatory offences are often denied safeguards that are generally considered (...) as important constituents of trial fairness. Relying on a new conceptualisation of regulatory offences, this paper advances a theory that justifies these exceptional rulings. (shrink)

Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and researchers were interviewed (...) who had been involved in using CMHA data for studies. Interviewees discussed the impact on stakeholder interests, sufficiency thresholds and procedural alterations of informed consent, data protection, gathering app user perspectives and representing users in app design and study conduct, and ensuring adequate support. Although the reasoning behind how and why these ethical safeguards and practices should be implemented showed considerable variability and several gaps, interviewees converged on various general lines of reasoning. This allowed for the development of a coherent and nuanced account that could prove useful for future CMHA studies and which could stimulate further normative investigation of the role of ethical safeguards and practices in these studies. (shrink)

After summarising three recent case histories of alleged scientific misconduct in Germany, the efforts of the Deutsche Forschungsgemeinschaft (German Research Council)a and the Hochschulrektorenkonferenz (German Rectors’ Conference) to promote academic and procedural safeguards in favour of professional self-regulation in science and scholarship are described in outline.

This paper explains why it is desirable for employers to have whistleblowing codes, and draws upon professional guidelines and empirical research to suggest the possible contents of whistleblowing policies and procedures. The paper discusses who and what should be covered and examines the issues of confidentiality and anonymity, reprisals and malicious allegations. It also highlights the need to provide advice and assistance to those who have concerns about wrongdoing at work. The author outlines the possible stages in a whistleblowing (...) class='Hi'>procedure, indicates how a concern should be raised and handled, and suggests how a procedure might be communicated and monitored. The paper concludes by emphasising that whistleblowing procedures provide an important safeguard against problems being overlooked and may be vital if legal pitfalls are to be avoided. (shrink)

A working party of academics from both professional safeguarding backgrounds and research backgrounds developed and wrote ethical guidelines on safeguarding children in research on behalf of their faculty research ethics committee. The working party encountered a lack of useful precedents while developing the guidelines leading to a lengthy process of debate and consideration of the issues. This paper explores the various issues and dilemmas arising during this process, particularly the tension between safeguarding children from abuse and maintaining research confidentiality. One (...) of the main areas of discussion was how to establish the limits of confidentiality without compromising the research in hand. The role and responsibilities of researchers in supporting children's welfare, and the development of procedures for ensuring that safeguarding is effective are discussed as key elements. In addition, the issues researchers may face when determining thresholds for intervention are considered alongside the uncertainties created by considerations of the extent to which children can give informed consent in research contexts. The paper reflects the process of considering these issues and the conclusions the working party drew as to how best to support children's welfare during research. It also outlines the key elements of the guidelines and the structures developed to ensure researchers could get advice if suspected child abuse became an issue in their research. The paper includes a short version of the guidelines which were eventually approved across the Higher Education Institute. (shrink)

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on study conduct, and the inappropriateness (...) of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. (shrink)

Compromise is a valuable decision-making procedure. This article argues that its value lies in the norms of reciprocity and consent. Reciprocity structures the practice of concession-giving. Compliance with this tacit rule expresses an ethos of mutual concern and achieves a shared sense of fairness. Consent is a useful safeguard against asymmetric deals and makes compromise morally binding. The procedural value of compromise gives us important reasons to choose this method for resolving conflicts.

Medically unnecessary penile circumcision (MUPC) performed on a non-consenting child has been the subject of increasing critical attention in recent years. This paper provides a behind-the-scenes narrative of the politics of ethical policymaking in the United Kingdom in this area including a discussion about some potential barriers to reform. After a brief overview of ethical guidance for medically unnecessary surgical procedures on children in general and on their genitalia in particular, the paper takes a closer look at three contemporary documents (...) released by UK medical bodies and highlights the unique ethical and safeguarding contradictions in this area. The outcomes of initiatives aimed at engaging constructively with the medical bodies and encouraging wider debate are then described, along with some of the main obstacles to engagement and counter-arguments employed. MUPC is subsequently discussed in a wider societal context, highlighting why serious safeguarding concerns have been raised about what many people believe to be a harmful, preventable practice hiding ‘in plain sight’. The paper ends by calling for UK MUPC guidance to be made consistent with the body of guidance that UK doctors are expected to follow. (shrink)

There is an increasing recognition of the need to provide ways for people to raise concerns about suspected wrongdoing by promoting internal policies and procedures which offer proper safeguards to actual and potential whistleblowers. Many organisations in both the public and private sectors now have such measures and these display a wide variety of operating modalities: in-house or outsourced, anonymous/confidential/identified, multi or single tiered, specified or open subject matter, etc. As a result of this development, a number of guidelines and (...) policy documents have been produced by authoritative bodies. This article reviews the following five documents from a management perspective, the first two deal with the principles upon which legislation might be based and the others describing good management practice: the Council of Europe Resolution 1729 (COER); Transparency International ‘Recommended Principles for Whistleblowing Legislation’ (TI); European Union Article 29 Data Protection Working Party Opinion (EUWP); International Chamber of Commerce ‘Guidelines on Whistleblowing’ (ICC); and the British Standards Institute ‘Whistleblowing arrangements Code of Practice 2008 (BSI). (shrink)

In this article, we want to reply to the recent article by Buturovic, to be able to correct some statements and allegations about this combined procedure. Organ donation after euthanasia is an extremely difficult procedure from an ethical point of view. On the one hand, we see a suffering patient who wants to die but who also wants to make an altruistic effort to donate his organs. On the other hand, we visualise a patient in need of an (...) organ but who is wary of the fact that someone else needs to die in order to potentially receive a transplant organ. Healthcare professionals seem to walk a tightrope when balancing between the interests of the patients at these two extremes: while facilitating the dying patient’s last wish on the one hand and abiding by all regulations regarding donation and transplantation on the other. Yet, these physicians, nurses and transplant coordinators do their utmost best to keep a strict line between euthanasia and organ donation, to avoid any external pressure on the patient, and to respect his autonomy. They really make an utmost attempt to make the process bearable for the donating patient. However, undeniably the patient who is about to undergo organ donation after euthanasia is nevertheless confronted with dozens of feelings and thoughts. However, this does not imply that procedural safeguards are failing to disentangle organ donation from euthanasia. (shrink)

Although in Italy there is currently no effective law on physician-assisted suicide or euthanasia, Decision No. 242 issued by the Italian Constitutional Court on September 25, 2019 established that an individual who, under specific circumstances, has facilitated the implementation of an independent and freely-formed resolve to commit suicide by another individual is exempt from criminal liability. Following this ruling, some citizens have submitted requests for assisted suicide to the public health system, generating a situation of great uncertainty in the application (...) processes. As a matter of fact, shared and defined procedures are lacking as Decision 242/2019 merely added some principles on which the legislature will have to base its future intervention. This paper analyses the advisory role that the Decision attributes to territorial ethics committees with the aim of stimulating discussions on their role in oversight mechanisms. The proposed conclusion is that the envisaged role does not appear consistent with the functions of these bodies and is ultimately substantially undefined and unjustified. (shrink)

Next SectionWainwright and Gallagher propose that when child protection concerns emerge significant difficulties arise for General Practitioners because of conflicts between the individual interests of children and parents who are their patients and the Paramountcy Principle. From a psychodynamic perspective their analysis does not give sufficient weight to the nature of personal as opposed to interpersonal conflict of a conscious or unconscious nature. When issues of major import arise, ordinary parenting inevitably involves parents in putting their children's needs first if (...) competing possibilities occur. It is an over-simplification to present this as a conflict between the interests of children and parents. Parents' own best interests are served by securing their children's safety and welfare. An appreciation of this is crucial in order to implement child protection procedures appropriately. Errors may occur because the complex emotions and relationships involved lead professionals to experience themselves as potential agents of harm rather than benefit. (shrink)

ObjectivesTo identify and analyse ethical considerations raised when individuals with body dysmorphic disorder consult for non-surgical cosmetic procedures.MethodsEthical analysis was conducted addressing the issues of best interests and capacity to consent for non-surgical cosmetic procedures in individuals with BDD. Analysis was informed by the findings of semistructured interviews with non-surgical cosmetic practitioners and mental health professionals.FindingsNon-surgical cosmetic interventions were viewed not to be in the best interests of individuals with BDD, as they fail to address core psychological issues, result in (...) dissatisfaction post-procedure, and risk harm. Referral to mental health services was advocated, however numerous obstacles to this were perceived. The issue of capacity to consent to non-surgical cosmetic procedures raised questions regarding whether standard capacity assessment is sensitive to the manner in which BDD may influence decision-making processes. In addition, concerns were voiced that decisions made by individuals with BDD in this context may be judged foolish, and thus wrongly equated with lack of capacity.Discussion/conclusionsEthical analysis, informed by the available evidence base, suggests that it is generally not in the best interests of individuals with BDD to undergo non-surgical cosmetic intervention, and referral to mental health services is indicated. Analysis of capacity draws parallels between BDD and anorexia nervosa, as decision-making capacity in both conditions can be impaired by pathological values derived from the disorder. Means of differentiating clinical assessment of pathological values from inappropriate value judgements are advocated, in order to safeguard against the latter encroaching into capacity assessment. (shrink)

Interest in children’s agency within the research process has led to a renewed consideration of the relationships between researchers and children. Child protection concerns are sometimes not recognised by researchers, and sometimes ignored. Yet much research on children’s lives, especially in health, has the potential to uncover child abuse. University research guidance should be in place to safeguard both researchers and the populations under scrutiny. The aim of this study was to examine university guidance on protecting children in research (...) contexts. (shrink)

As an independent researcher, registered social worker and erstwhile long-term, long-distance carer, the care of older people and protection of elders from abuse had been constant professional and personal foci for me for many years. Commissioned to review a case involving the serious abuse of an elder where official safeguarding procedures had not been used, I puzzled why this had been managed ?informally? by social services and partner agencies (i.e. outside adult safeguarding procedures), with vague unspecified ?monitoring? (AEA 2006). Why (...) was there this apparent gap between policy intention and implementation? That question led to research on which this essay is based. (shrink)

This article provides a property analysis of electronic money, showing that the issuance of electronic money cannot involve a trust. The analysis is also applicable to other digital assets that may be said to involve a trust, and as such provides a timely contribution to current discussions on the legal nature and categorisation of digital assets both in the UK and internationally.

Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures (...) as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised. (shrink)

Ecologically valid procedures for eliciting and measuring children's anger are needed to enhance researchers' theories of children's emotional competence and to guide intervention efforts aimed at reactive aggression. The purpose of this article is to describe a laboratory-based game-playing procedure that has been used successfully to elicit and measure children's anger across observational, physiological, and self-report channels. Steps taken to ensure that participants are treated ethically and fairly are discussed. The article highlights recently published data that emphasize the importance (...) of provoking and assessing children's anger across multiple channels using laboratory-based procedures. Finally, it presents preliminary data that suggest that the safeguards taken to protect children were successful in making both children and their parents feel well treated and comfortable. (shrink)

In the name of safeguarding public interests and ethical principles, China’s National Health Commission bans unmarried women from using assisted reproductive technology (ART), including egg freezing. Supported by local governments, the ban has restricted single women’s reproductive rights nationwide. Although some courts bypassed the ban to allow widowed single women to use ART, they have not adopted a position in favour of single women’s reproductive autonomy, but quite the contrary. Faced with calls to relax the ban and allow single women (...) to freeze eggs electively, the National Health Commission refused to amend their policy, partly to protect women’s well-being paternalistically and partly to implement the central government’s policies to boost the birthrate and maintain traditional family structures. While the government’s concerns about elective egg freezing are not entirely unfounded, they have failed to demonstrate that banning single women’s egg freezing is a suitable, necessary and proportionate means to safeguard societal interests and ethical principles. The authority’s assumptions that women cannot make rational decisions for their health even with adequate informed consent procedures, that banning egg freezing by single women promotes a culture of having children ‘at a proper age’, and that egg freezing by single women offends China’s public moralities have not been substantiated. (shrink)

The forms of status quo critique that current approaches to realist political theory enable are unsatisfactory. They either formulate standards of constructive critique, but remain uncritical of a great range of political situations, or they offer means for criticising basically all political situations, but neglect constructive critique. As part of the endeavour to develop a status quo critique that is potentially radical and constructive, realists might consider possibilities to use non-standard social practices – social practices that function differently than stipulated (...) by existing political forms – as resources for critique. The article shows how the capacity of non-standard social practices to serve as resources for critique might be exploited. It also defends the proposed procedure against the likely objection that it relies on moralist argumentation. The evaluation of the status quo and the selection of social practices need normative argumentation, but such argumentation can be grounded in the actual to an extent that safeguards its realist nature. (shrink)

The authors report the first Italian experience of a research ethics committee (REC) audit focused on the evaluation of the REC’s compliance with standard operating procedures, requirements in insurance coverage, informed consent, protection of privacy and confidentiality, predictable risks/harms, selection of subjects, withdrawal criteria and other issues, such as advertisement details and justification of placebo. The internal audit was conducted over a two-year period (March 2009–February 2011) divided into quarters to better value the influence of the new insurance coverage regulation (...) that came into effect in March 2010 (Ministerial Decree of 14 July, 2009) and expand the requirements to safeguard participants in clinical drug trials including other critical items as information and consent and the risks to benefits ratio. Out of a total of 639 REC’s opinions and research studies, 316 were reviewed. Regarding the insurance policy requirements, Auditor/REC non-compliance occurred only in one case. The highest number of Auditor/REC non-compliance was in regard to information and consent, which should have incurred a suspended decision rather than a favorable opinion. This internal audit shows the importance and the difficulty of the review process. For this reason, specific courses for members of the research ethics committee and for those who aspire to become auditors will be provided. There may also be efforts to improve the standard operating procedures already in place. (shrink)

In 2002 with the passing of the Euthanasia Law, Belgium became one of the few countries worldwide to legalize euthanasia. In the 18 years since the passing of the law, much has changed. We argue that in Belgium a widening of the use of euthanasia is occurring and that this can be ethically and legally problematic. This is in part related to the fact that several legal requirements intended to operate as safeguards and procedural guarantees in reality often fail to (...) operate as such. We focus on three kinds of safeguards or procedural guarantees: (1) the legally defined due care criteria for eligibility for euthanasia; (2) the consultation of a second (and sometimes third) physician; and (3) the reporting of euthanasia cases to the Federal Control and Evaluation Commission for Euthanasia. We will show how each of these three safeguards can exhibit shortcomings in theory and practice. (shrink)

Our understanding of the neurochemical bases of human love and attachment, as well as of the genetic, epigenetic, hormonal, and experiential factors that conspire to shape an individual's sexual orientation, is increasing exponentially. This research raises the vexing possibility that we may one day be equipped to modify such variables directly, allowing for the creation of “high-tech” conversion therapies or other suspect interventions. In this article, we discuss the ethics surrounding such a possibility, and call for the development of legal (...) and procedural safeguards for protecting vulnerable children from the application of such technology. We also consider the more difficult case of voluntary, adult “conversion” and argue that in rare cases, such attempts might be permissible under strict conditions. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

The paper begins by locating the issue of trade within the broader literature on international and global justice. It then sets out eight different conceptions of ‘fair trade’, and examines the principles that lie behind them. They fall into three broad categories: procedural fairness accounts, which apply principles of equal treatment to the international rules under which trade takes place; producers’ entitlement accounts, which claim that trade must be structured so that all participants are safeguarded against harms such as exploitation (...) or poverty; and fair exchange accounts, which require trade to be conducted on terms that produce a particular division of resources or benefits between the trading partners. These conceptions are partly complementary, but may on occasion pull in different directions, requiring us to reflect on the relative weights we attach to different aspects of fairness in trade. (shrink)

The latest research in Spain indicates that the most advanced neuromarketing consulting companies in the sector are those that have been able to innovate in the development of their own technologies and methodologies. Despite their reduced volume of business compared to total investment in Marketing and market research in our country, there are signs that suggest these companies have great potential to improve this sector, which is still to be explored. For this reason, this research straddling the ethnographic method and (...) the theoretical-descriptive method, aims to help us better understand the characteristic features of this sector by actively listening to the professional voices that lead it. Its epistemological value lies in its contribution to understanding the business culture related to the professional development of neuromarketing in our country today. The study shows that the main human resources strategy of neuromarketing consulting companies is based on the creation of multidisciplinary work teams. In addition, most of them develop data analysis software, which they can safeguard under various types of copy right, and on other occasions they manage to patent them, to later apply them to the objectives and purposes of their company. This would also explain the widespread use of certain procedures and resources by the vast majority of the consulting companies investigated. Thus, the trend in the market is the implementation of different synchronization software to the available technological and methodological resources. Others have even gone so far as to create a new technological support to incorporate methodologies already in use. Therefore, this gives them exclusivity in their services and the necessary competitive advantage over their competitors. Among other factors, these inferences about how this sector really works are very likely to be very useful in the academic field, which will constitute a further step in generating critical thinking and in expanding the frontiers of knowledge around this disciplin. (shrink)

Not all actions that are legal are necessarily morally correct. However, there are few protections for providers who are pressured to comply with actions and procedures that infringe on their religious beliefs regarding human dignity. The right of health care providers to freely act on religious convictions and refrain from cooperating with morally reprehensible tasks is often eschewed in favor of political correctness or is branded as discrimination. Adequate safeguards are urgently needed for health care workers at all levels to (...) ensure that they can continue to care for the sick and most vulnerable members of the community without violating the dictates of their conscience. This article examines the free exercise of religion as it pertains to medical provider conscience protections. The author argues for conscience protection legislation with a right of action. (shrink)

Deep brain stimulation (DBS) is frequently described as a ‘reversible’ medical treatment, and the reversibility of DBS is often cited as an important reason for preferring it to brain lesioning procedures as a last resort treatment modality for patients suffering from treatment-refractory conditions. Despite its widespread acceptance, the claim that DBS is reversible has recently come under attack. Critics have pointed out that data are beginning to suggest that there can be non-stimulation-dependent effects of DBS. Furthermore, we lack long-term data (...) about other potential irreversible effects of neuromodulation. This has considerable normative implications for comparisons of DBS and brain lesioning procedures. Indeed, Devan Stahl and colleagues have recently argued that psychiatric DBS should be subject to the same legal safeguards as other forms of psychosurgery, supporting their position by forcibly criticising the claim that DBS is reversible. In this paper, I respond to these criticisms by first clarifying the descriptive and evaluative elements of the reversibility claim that supporters of DBS might invoke, and the different senses of ‘reversibility’ that we might employ in discussing the effects of medical procedures. I go on to suggest that it is possible to defend a nuanced version of the reversibility claim. To do so, I explain how DBS has some effects that are stimulation dependent in the short term, and argue that these effects can have significant normative implications for patient well-being and autonomy. I conclude that we should not abandon a nuanced version of the reversibility claim in the DBS debate. (shrink)

Tragic choices arise during the COVID-19 pandemic when the limited resources made available in acute medical settings cannot be accessed by all patients who need them. In these circumstances, healthcare rationing is unavoidable. It is important in any healthcare rationing process that the interests of the community are recognised, and that decision-making upholds these interests through a fair and consistent process of decision-making. Responding to recent calls (1) to safeguard individuals’ legal rights in decision-making in intensive care, and (2) (...) for new authoritative national guidance for decision-making, this paper seeks to clarify what consistency and fairness demand in healthcare rationing during the COVID-19 pandemic, from both a legal and ethical standpoint. The paper begins with a brief review of UK law concerning healthcare resource allocation, considering how community interests and individual rights have been marshalled in judicial deliberation about the use of limited health resources within the National Health Service (NHS). It is then argued that an important distinction needs to be drawn between procedural and outcome consistency, and that a procedurally consistent decision-making process ought to be favoured. Congruent with the position that UK courts have adopted for resource allocation decision-making in the NHS more generally, specific requirements for a procedural framework and substantive triage criteria to be applied within that framework during the COVID-19 pandemic are considered in detail. (shrink)

Background: The Voluntary Assisted Dying Act 2017 passed into law in Victoria, Australia, on the 29 November 2017. Internationally, nurses have been shown to be intimately involved in patient care throughout the voluntary assisted dying process. However, there is a paucity of research exploring Australian nurses’ perspectives on voluntary assisted dying and, in particular, how Victorian nurses anticipate the implementation of this ethically controversial legislation will impact their professional lives. Objectives: To explore Victorian nurses’ expectations of the ethical and practical (...) impacts the voluntary assisted dying legislation will have on their professional lives. Research design: This qualitative study analysed nurses’ free text responses collected as part of a larger mixed methods online survey investigating staff views on the Voluntary Assisted Dying Act. Data were collected during the period between the passing of the voluntary assisted dying legislation and the start date and were analysed using inductive content analysis. Participants and research context: Free text survey responses were analysed from 1873 nurses employed across seven Victorian health services located in both metropolitan and regional areas of the state. Ethical considerations: The study obtained research ethics approval and all participants were informed of the voluntary and anonymous nature of their participation. Findings: This study identified three broad areas of Victorian nurses’ professional lives that they expected to be impacted by the implementation of voluntary assisted dying: professional identity, career development and workplace relationships. Conclusion: Participants anticipate diverse and nursing-specific impacts of the implementation of voluntary assisted dying in Victoria. Their insights can inform health services in jurisdictions considering or already implementing voluntary assisted dying, to develop policies, procedures and staff training programmes that safeguard the well-being and legal rights of their nursing staff. (shrink)

Various due process provisions designed for use by civil servants in administrative decision-making may become redundant when automated decision-making is taken into use in public administration. Problems with mechanisms of good government, responsibility and liability for automated decisions and the rule of law require attention of the law-maker in adapting legal provisions to this new form of decision-making. Although the general data protection regulation of the European Union is important in acknowledging automated decision-making, most of the legal safeguards within administrative (...) due process have to be provided for by the national law-maker. It is suggested that all countries have a need to review their rules of administrative due process with a view to bringing them up to date regarding the requirements of automated decision-making. In whichever way the legislation is framed, the key issues are that persons who develop the algorithm and the code as well as persons who run or deal with the software within public authorities are aware of the preventive safeguards of legality in the context of automated decision-making, not only of the reactive safeguards constituted by the complaint procedures, and that legal mechanisms exist under which these persons can be held accountable and liable for decisions produced by automated decision-making. It is also argued that only rule-based systems of automatized decision-making are compatible with the rule of law and that there is a general interest in preventing a development into a rule of algorithm. (shrink)

This article examines discursive strategies used by police and politicians to describe and justify the application of penalty notices to minor criminal offences. Critical discourse analysis is used as an analytical tool to show how neoliberal economic thinking has informed the prism through which infringement notices have been rationalised as a legitimate alternative to traditional criminal prosecution, while also highlighting the contradictions inherent in neoliberalism as an ideology through which to view the embrace of legally hybrid powers in the criminal (...) justice system. Discursive strategies identified in the article include the use of ideological keywords ordinarily associated with free market economics and managerial efficiency; the adoption of militaristic vocabulary and metaphors in representations of policing and space; the strategies of assimilation and formulation to represent police views as uniform and coherent; and the use of nominalisations to legitimise the lack of procedural safeguards attached to infringement notices. The logic of—and the language ordinarily associated with—the domain of private business, the ‘free market’, and deregulation has infiltrated the criminal justice sphere. In addition, the naturalisation of neoliberal economic discourse in political and police representations of infringement notices produces and sustains important ideological effects, by disguising the ways in which the expanded use of administrative sanctions in public order policing intensifies state power at the expense of due process of law. (shrink)

In our recent article ‘The Ethics of the Algorithmic Prediction of Goal of Care Preferences: From Theory to Practice’1, we aimed to ignite a critical discussion on why and how to design artificial intelligence (AI) systems assisting clinicians and next-of-kin by predicting goal of care preferences for incapacitated patients. Here, we would like to thank the commentators for their valuable responses to our work. We identified three core themes in their commentaries: (1) the risks of AI paternalism, (2) worries about (...) attacks to our humanity stemming from the use of AI and (3) the possibility of designing AI systems for more relevant use cases than the one we consider in our work. We shall focus on these themes, leaving aside some other interesting suggestions, given the limited space available for our response. Diaz Milian and Bhattacharyya discuss the risks of AI paternalism highlighting how the use of an AI to predict goal of care preferences may incentivise clinicians and surrogates to shift the burden of decision making to the machine.2 In particular, ‘[i]f the AI-generated response is given priority above the other agents’2 and the AI makes decisions autonomously, then ‘AI paternalism’ would emerge.2 Against this possibility, the authors suggest four safeguards to be implemented in the AI life-cycle.2 These are procedures that may improve the trustworthiness of the AI and human control over it.3 We agree that it is important …. (shrink)

High-level radioactive waste is not fundamentally different from all other pollutants having long life spans in the biosphere. Nevertheless, its management has been treated differently by policy makers in the United States as well as most other nations, who have chosen permanent isolation from the biosphere as the objective of high-level radioactive waste disposal policy. This policy is to be attained by burial deep within stable geologic formations. The fundamental justification for this policy choice has been provided by utilitarian ethical (...) analysis. It, in turn, has been supported primarily by assumptions, based on expert opinion, about the ultimate safety of geologic disposal. However, close analysis of these assumptions reveals that the safety of geologic disposal is highly uncertain. Moreover, factors such as the possibility for human intrusion into repository sites make it impossible to even guess at the ultimate consequences of any policy choice pertaining to the final disposal of high-level radioactive waste. I discuss why utilitarian ethics cannot be used to determine the efficacy of such policy choices. I then develop an alternative approach which is based on egalitarian principles of procedure and utilize it to explore policy proposals which promote justice and equity in the high-level radioactive waste management process. I argue that there are two possible solutions to the high-level radioactive waste dilemma: an amendment to the U.S. Constitution to create an institution to advocate on behalf of the interests of future generations and the active management of the waste in monitored, retrievable facilities in perpetuity. Of these two options, I find maintaining surveillance and vigilance in perpetuity to safeguard high-level radioactive waste to be preferable because of its political and ethical efficacy. (shrink)

The recent wave of medical assistance in dying legalisation raises questions about proper oversight of the practice as new systems for data collection, case assessment and public reporting emerge. Newer systems, such as in Spain, New Zealand and Colombia, are eschewing the retrospective approach used for case assessment in older systems, particularly those in the Netherlands, Belgium and the USA, in favour of an approach requiring more extensive review prior to the procedure. This shift aims to increase compliance with (...) each jurisdiction’s specific safeguards and legal criteria as well as to protect vulnerable patients, but also risks stifling access to the practice and increasing administrative burden on clinicians and patients. Newer systems also tend to favour more extensive data collection than older systems, while failing to be as transparent with public reporting. Inconsistency in data collection and public reporting make it difficult for researchers, policymakers and the public to assess the practice and help achieve a balance between access and compliance. Research on oversight activities is sparse, and there is a need for clarity to determine how best to handle violations of the law and how to create best practices. (shrink)

In 2017, Victoria became the first state in Australia to pass legislation permitting voluntary assisted dying. Under this law, only those people who are near the end of their lives may access voluntary assisted dying, and because many of these people require nursing care to manage the progression of their illness or their symptoms, it will invariably have an impact on nursing practice. The Victorian law includes a series of procedural steps as safeguards to ensure that the law operates as (...) intended. To support people who choose voluntary assisted dying and to practice safely within boundaries of the law, nurses must be aware of these requirements and how they operate. However, there are often gaps in nurses’ legal knowledge. This was demonstrated in an article that aimed to inform nurses about the operation of Voluntary Assisted Dying Act 2017 (Vic) but contained several errors and misstatements of the law. Our article corrects these errors and discusses how the law is intended to be applied by revisiting the fictional case of Chloe – a woman with a terminal illness who is seeking voluntary assisted dying. As the Voluntary Assisted Dying Act 2017 (Vic) also protects nurses from liability if they act in accordance with its provisions, we conclude that sound knowledge and understanding of its operation support nurses to provide the safe, comprehensive and compassionate care their patients deserve at the end of life. (shrink)

Global climate change raises profound questions for social and political theorists. The human impacts of climate change are sufficiently broad, and generally adverse, to threaten the rights and freedoms of existing and future members of all countries. These impacts will also exacerbate inequalities between rich and poor countries despite the limited role of the latter in their origins. Responding to these impacts will require the implementation of environmental and social policies that are both environmentally effective and consistent with the equality (...) and liberty of populations to which they are applied. This article considers whether global emissions trading, namely, the creation of a global market for tradable allowances conferring the right to emit a certain amount of greenhouse gas over a specified time period, is normatively defensible from a liberal egalitarian perspective. After a brief review of the theory and practice of emissions trading, a number of normative objections to the international trade in emissions allowances are analysed. These objections appeal to one, or a combination, of two claims. First, emissions trading schemes are likely to produce undesirable outcomes, such as environmental neglect, in the further future. I call these ‘instrumental objections’. Second, emissions trading schemes violate non‐consequential norms of justice and fairness. I call these ‘intrinsic objections’. It is argued that, when combined, instrumental and intrinsic objections indicate that instituting a global network of emissions trading schemes, as envisioned by a number of parties to the Kyoto Protocol and Copenhagen Accord, would be illegitimate in absence of significant procedural and consequential safeguards. (shrink)

This article discusses obstacles to overcoming dangerous climate change. It employs an account of dangerous climate change that takes climate change and climate change policy as dangerous if it imposes avoidable costs of poverty prolongation. It then examines plausible accounts of the collective action problems that seem to explain the lack of ambition to mitigate. After criticizing the merits of two proposals to overcome these problems, it discusses the pledge and review process. It argues that pledge and review possesses the (...) virtues of encouraging broad participation and of providing a procedural safeguard for the right of sustainable development. However, given the perceptions of the marginal short term costs of mitigation, pledge and review is unlikely, at least initially, to issue in an agreement to make deep reductions in greenhouse gas emissions. Because there is no rival approach that seems likely to better instantiate the two virtues, pledge and review may be the best available policy for mitigation. Moreover, recent economic research suggests that the co-benefits of mitigation may be greater than previously assumed and that the costs of renewable energy may be less than previously calculated. This would radically undermine claims that the short term mitigation costs necessarily render mitigation irrational and produce collective action problems. Given the circumstances, pledge and review might be our best hope to avoid dangerous climate change. (shrink)

At a time when monuments are falling, learning processes and discourses accelerating, it seems apposite to pay attention also to artworks commissioned by established institutions in order to give form to good intentions. This essay focuses on a commissioned portrait of female professors, on art education, Dutch art policy / politics and the former colonial site that the University of Amsterdam occupies, in order to aide this institution’s desired process to become more inclusive. It proposes Art Research as a realm (...) that can contribute a differentiated and thoughtful positioning of research and universities in visual and public domains: a necessary ally. Since the essay was written in Summer 2019, much has happened: the Faculty in question has been found to be the locus of ongoing sexual harassment. The student victims did not feel that the complaints procedures were safeguarding them sufficiently. They went to the media. The university’s ombudsperson asked to investigate found no systemic deficiencies. Since George Floyd’s death, such a conclusion is no longer possible, and the Board of the university has admitted shameful and systemic failures.[1] We now know better what “systemic” means. This essay’s case study is meant to show that art and philosophy can jointly analyze systems and organizations as a basis for necessary conversations, followed by a broad range of people taking responsibility and acting accordingly. In Covid lock-down times, it became deceptively obvious how unimportant art is. Through an essay such as this, it is hopefully also evident how art can be an indicator of institutional culture: e.g. in relation to how embedded the principle to consult specialists is, even if this seems to be unimportant. And that is a matter of life and death. [1] https://www.folia.nl/actueel/138876/fred-weerman-en-geert-ten-dam-dit-is-ongehoord-beschamend. (shrink)

This is an extensive critical review of Euthanasia in International and Comparative Perspective. My Review is divided into five parts. First, I outline the book's strengths. I proceed by speaking of the need for clear and cohesive terminology. I then discuss end-of-life decision-making in some of the countries: Belgium, The Netherlands, and the State of Oregon in the United States, all allow PAS. Belgium and The Netherlands also allow euthanasia. I also discuss Israel's Dying Patient Law,13 enacted by the Knesset (...) on December 5, 2005. Finally, I make some suggestions for improvement, including a detailed proposal for PAS which I conceive to be the best policy when balancing one against the other the autonomy of the patient, on the one hand, and the safeguards against abuse when life might be considered too lightly, on the other. Indeed, the main difference between euthanasia and PAS is that in euthanasia, it is the physician who makes the final act of taking patient's life, whereas in PAS it is the patient who takes his or her life. In euthanasia, the physician has control over the process. In PAS, the physician controls the procedure up until the last act. The patient has control over the very act of suicide. (shrink)

Although there has been critical analysis of how the informed consent process functions in relation to participation in research and particular ethical 'dilemmas', there has been little examination of consenting to more routine medical procedures. We report a qualitative study of 25 women who consented to surgery. Of these, nine were ambivalent or opposed to having an operation. When faced with a consent form, women's accounts suggest that they rarely do anything other than obey professionals' requests for a signature. An (...) interactionist analysis suggests that women's capacity to act is reduced by the hospital structure of tacit, socially-imposed rules of conduct. Bourdieu's concepts of habitus, capital and symbolic power/violence show how the practical logic that women apply confers a 'sense of place' relative to professionals. Women experience deficits in capital that constrain their ability to exercise choice. This work demonstrates the weakness of the consent process as a safeguard of autonomy. (shrink)

This article critically examines Busk's Democracy in Spite of the Demos, which critiques the “categorical imperative of democracy.” Although Busk effectively challenges the commitment to value-neutral democratic procedures as the foundation for legitimate law, his alternative, curtailing powerful interests ability to manipulate voters using “socially necessary delusions,” risks establishing elite rule. This article instead proposes basic liberal rights as the normative foundation for legitimate public order and militant democracy as its most effective institutional safeguard, arguing that this combination better (...) realizes human emancipation. (shrink)

Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data (...) to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers. (shrink)

Since USA constitutional precedent established in 1976, adolescents have increasingly been afforded the right to access contraception without first obtaining parental consent or authorisation. There is general agreement this ethically permissible. However, long-acting reversible contraception methods have only recently been prescribed to the adolescent population. They are currently the most effective forms of contraception available and have high compliance and satisfaction rates. Yet unlike other contraceptives, LARCs are associated with special procedural risks because they must be inserted and removed by (...) trained healthcare providers. It is unclear whether the unique invasive nature of LARC changes the traditional ethical calculus of permitting adolescent decision-making in the realm of contraception. To answer this question, we review the risk–benefit profile of adolescent LARC use. Traditional justifications for permitting adolescent contraception decision-making authority are then considered in the context of LARCs. Finally, analogous reasoning is used to evaluate potential differences between permitting adolescents to consent for LARC procedures versus for emergency and pregnancy termination procedures. Ultimately, we argue that the invasive nature of LARCs does not override adolescents’ unique and compelling need for safe and effective forms of contraception. In fact, LARCs may oftentimes be in the best interest of adolescent patients who wish to prevent unintended pregnancy. We advocate for the specific enumeration of adolescents’ ability to consent to both LARC insertion and removal procedures within state policies. Given the provider-dependent nature of LARCs and the stigma regarding adolescent sexuality, special political and procedural safeguards to protect adolescent autonomy are warranted. (shrink)

A review of the literature on corporate governance serves to demonstrate the applicability of many governance solutions to the university setting. Based on a review of university scandals, most of which are recent but some of which took place decades ago, it is possible to categorize them as follows: sex scandals, drugs, cheating, hazing, admissions and diplomas, on-the-job consumption, athletics, and murder. Several examples are provided in the paper, along with their impact on various stakeholders. The paper then discusses a (...) variety of solutions designed to either preempt the activities potentially leading to scandal, to deter them or to punish perpetrators. Some of these involve structural changes, institutional policies and procedures, fines, terminations, and sanctions. The paper emphasizes the proactive safeguards which govern and monitor to make sure that universities do not suffer on the back end and that their reputations do not suffer into the future. (shrink)

Background: Nurses and midwives have a professional obligation to promote health and prevent disease, and therefore they have an essential role to play in vaccination. Despite this, some nurses and midwives have been found to take an anti-vaccination stance and promulgate misinformation about vaccines, often using Facebook as a platform to do so. Research question: This article reports on one component and dataset from a larger study – ‘the positives, perils and pitfalls of Facebook for nurses’. It explores the specific (...) issue of nurses and midwives who take an anti-vaccination stance, deemed to be unprofessional by crossing professional boundaries and by providing medical information on Facebook that is not within their scope of practice. Participants: Data were collected via an online worldwide survey from nurse and midwife participants, distributed and ‘snowballed’ through relevant nursing and midwifery groups on Facebook. In total, 1644 Registered Nurses and Midwives, and Enrolled Nurses worldwide attempted the online survey. There were 1100 (66.9%) completed surveys and 54 partially (33.1%) completed surveys. Semi-structured interviews were also conducted online using Skype® with 17 participants in Australia. Ethical considerations: Ethical processes and procedures have been adhered to relating to privacy, confidentiality and anonymity of the participants. Findings/results: A mixed-methods approach was used, including descriptive and content analysis of the quantitative survey data and thematic analysis of the qualitative interview data. The main theme ‘blurred boundaries’ was generated, which comprised three sub-themes: ‘follow the science, ‘abuse of power and erosion of trust’ and ‘the moral and ethical responsibility to safeguard public health’. The results offer an important and unique understanding of how nurses and midwives interpret the conduct of fellow health professionals as unprofessional and crossing the professional boundary if they used Facebook to promulgate anti-vaccination messages and/or give medical advice online. Conclusion: There are many positives and negatives for nurses and midwives associated with using Facebook for personal and professional communication, which is in keeping with the results of the larger study from which this article is taken. Professional behaviour is a key theme in the larger research as is the ethical construct of ‘every act has a consequence’; however, in this article, the theme ‘blurred boundaries’ offers an overall understanding of how nurses and midwives interpret the behaviour of their colleagues who espouse anti-vaccination sentiment and/or give medical advice online that is outside their scope of practice and education. (shrink)