Artificial intelligence (AI) based clinical decision support systems (CDSS) are becoming ever more widespread in healthcare and could play an important role in diagnostic and treatment processes. For this reason, AI‐based CDSS has an impact on the doctor–patient relationship, shaping their decisions with its suggestions. We may be on the verge of a paradigm shift, where the doctor–patient relationship is no longer a dual relationship, but a triad. This paper analyses the role of AI‐based CDSS for shared decision‐making to better (...) comprehend its promises and associated ethical issues. Moreover, it investigates how certain AI implementations may instead foster the inappropriate paradigm of paternalism. Understanding how AI relates to doctors and influences doctor–patient communication is essential to promote more ethical medical practice. Both doctors' and patients' autonomy need to be considered in the light of AI. (shrink)

Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals about a person’s donation wishes. Second, families (...) can authorize organ procurement in the absence of deceased’s preferences and the default is not to remove organs, and oppose donation where there is no evidence of preference but the default is to presume consent; in both cases, the decision could be based on their own wishes or what they think the deceased would have wanted. Finally, families can overrule the known wishes of the deceased, which can mean preventing donation, or permitting donation when the deceased refused it. We propose a schema of 4 levels on which to map these possible family roles: no role, witness, surrogate, and full decisional authority. We conclude by mapping different jurisdictions onto this schema to provide a more comprehensive understanding of the consent system for organ donation and some important nuances about the role of families. This classificatory model aims to account for the majority of the world’s consent systems. It provides conceptual and methodological guidance that can be useful to researchers, professionals, and policymakers involved in organ procurement. (shrink)

Informed consent is at the core of the clinical relationship. With the introduction of machine learning in healthcare, the role of informed consent is challenged. This paper addresses the issue of whether patients must be informed about medical ML applications and asked for consent. It aims to expose the discrepancy between ethical and practical considerations, while arguing that this polarization is a false dichotomy: in reality, ethics is applied to specific contexts and situations. Bridging this gap and considering the whole (...) picture is essential for advancing the debate. In the light of the possible future developments of the situation and the technologies, as well as the benefits that informed consent for ML can bring to shared decision-making, the present analysis concludes that it is necessary to prepare the ground for a possible future requirement of informed consent for medical ML. (shrink)

We have a responsibility to obey COVID-19 rules, in order to minimize risk. Yet it is still seen as rude to challenge people who do not respect those rules, when in fact the opposite is true; it is rude to increase risk to others. In this paper I analyse the relationship between risk, responsibility, and rudeness by analysing the evolution of the main governmental slogans and rules and explore the complex relationship between simplicity, safety, and perceived fairness of these rules, (...) and how these features in turn influence the extent to which we act responsibly. I begin by exploring the relationship between rudeness and risk in our interactions about coronavirus, before going on to analyse the importance of clear rules in minimizing tension between us, illustrating the argument with various slogans including “stay at home,” “stay alert,” and the now infamous “rule of six,” which is actually at least three different rules. Ultimately, we are faced with a paradox: people annoyed about complex/unfair rules are less likely to obey them, even if that means rules will apply for longer and even though it was noncompliance with earlier simpler rules that means new rules are necessary. And if rules make less or no sense it is harder to try to get people to follow them in your own capacity as a citizen; it is hard to police rules that are seen as arbitrary or unfair. (shrink)

In this chapter I consider the narrow and wider benefits of permitting assisted dying in the specific context of organ donation and transplantation. In addition to the commonly used arguments, there are two other neglected reasons for permitting assisted suicide and/or euthanasia: assisted dying enables those who do not wish to remain alive to prolong the lives of those who do, and also allows many more people to fulfill their wish to donate organs after death. In the first part of (...) this chapter I explore the possibility of allowing those who die with assistance to donate their organs and the potential benefits of doing so in countries where some form of assisted dying is legal; in the second part I consider the added force that organ donation considerations bring to the argument in favour of legalizing assisted dying in countries where such practices remain forbidden. (shrink)

Emergence of novel genome engineering technologies such as clustered regularly interspaced short palindromic repeat has refocused attention on unresolved ethical complications of synthetic biology. Biosecurity concerns, deontological issues and human right aspects of genome editing have been the subject of in-depth debate; however, a lack of transparent regulatory guidelines, outdated governance codes, inefficient time-consuming clinical trial pathways and frequent misunderstanding of the scientific potential of cutting-edge technologies have created substantial obstacles to translational research in this area. While a precautionary principle (...) should be applied at all stages of genome engineering research, the stigma of germline editing, synthesis of new life forms and unrealistic presentation of current technologies should not arrest the transition of new therapeutic, diagnostic or preventive tools from research to clinic. We provide a brief review on the present regulation of CRISPR and discuss the translational aspect of genome engineering research and patient autonomy with respect to the “right to try” potential novel non-germline gene therapies. (shrink)

In this article I argue that vagueness concerning consent to post-mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chances that the patient's intention to donate (...) will not be fulfilled due to the family's distress. Fourth, the consequent reduction in the number of donated organs leads to avoidable deaths and increased suffering among potential recipients, and distresses them and their families. There are three strategies which could be used to reduce the harmful effects of this vagueness. First, recategorizing the reasons given by families who refuse donation from registered donors would bring greater clarity to donation discussions. Second, people who wish to donate their organs should be encouraged to discuss their wishes in detail with their families, and to consider recording their wishes in other ways. Finally, the consent system for organ donation could be made more detailed, ensuring both that more information is provided to potential donors and that they have more flexibility in how their intentions are indicated; this last strategy, however, could have the disadvantage of discouraging some potential donors from registering. (shrink)

In a footnote to the first edition of Political Liberalism, John Rawls introduced an example of how public reason could deal with controversial issues. He intended this example to show that his system of political liberalism could deal with such problems by considering only political values, without the introduction of comprehensive moral doctrines. Unfortunately, Rawls chose “the troubled question of abortion” as the issue that would illustrate this. In the case of abortion, Rawls argued, “the equality of women as equal (...) citizens” overrides both “the ordered reproduction of political society over time” and also “the due respect for human life.” It seems fair to say that this was not the best choice of example and also that Rawls did not argue for his example particularly well: a whole subset of the Rawlsian literature concerns this question alone. (shrink)

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of (...) whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

In this Current Controversy article, I describe and analyse the imminent move to a system of deemed consent for deceased organ donation in England and similar planned changes in Scotland, in light of evidence from Wales, where the system changed in 2015. Although the media has tended to focus on the potential benefits and ethical issues relating to the main change from an opt-in default to an opt-out one, other defaults will also change, while some will remain the same. Interaction (...) of these other defaults with the principal one raise several ethical issues that may complicate efforts to use deemed consent to increase donation rates. Most significantly, changing the main default will have the effect of changing the default for patients' families, who play a vital role in the consent process. (shrink)

The Ebola epidemic in Western Africa has highlighted issues related to weak health systems, the politics of drug and vaccine development and the need for transparent and ethical criteria for use of scarce local and global resources during public health emergency. In this paper we explore two key themes. First, we argue that independent of any use of experimental drugs or vaccine interventions, simultaneous implementation of proven public health principles, community engagement and culturally sensitive communication are critical as these measures (...) represent the most cost-effective and fair utilization of available resources. Second, we attempt to clarify the ethical issues related to use of scarce experimental drugs or vaccines and explore in detail the most critical ethical question related to Ebola drug or vaccine distribution in the current outbreak: who among those infected or at risk should be prioritized to receive any new experimental drugs or vaccines? We conclude that healthcare workers should be prioritised for these experimental interventions, for a variety of reasons. (shrink)

Nanotechnology, which involves manipulation of matter on a ‘nano’ scale, is considered to be a key enabling technology. Medical applications of nanotechnology are expected to significantly improve disease diagnostic and therapeutic modalities and subsequently reduce health care costs. However, there is no consensus on the definition of nanotechnology or nanomedicine, and this stems from the underlying debate on defining ‘nano’. This paper aims to present the diversity in the definition of nanomedicine and its impact on the translation of basic science (...) research in nanotechnology into clinical applications. We present the insights obtained from exploratory qualitative interviews with 46 stakeholders involved in translational nanomedicine from Europe and North America. The definition of nanomedicine has implications for many aspects of translational research including: fund allocation, patents, drug regulatory review processes and approvals, ethical review processes, clinical trials and public acceptance. Given the interdisciplinary nature of the field and common interest in developing effective clinical applications, it is important to have honest and transparent communication about nanomedicine, its benefits and potential harm. A clear and consistent definition of nanomedicine would significantly facilitate trust among various stakeholders including the general public while minimizing the risk of miscommunication and undue fear of nanotechnology and nanomedicine. (shrink)

In their recent paper in this journal, Heinz and colleagues accuse proponents of cognitive enhancement of making two unjustified assumptions. The first of these is the assumption that neuroenhancing drugs will be safe; the second is that research into cognitive enhancement does not pose particular ethical problems. Heinz and colleagues argue that both these assumptions are false. Here, I argue that these assumptions are in fact correct, and that Heinz and colleagues themselves make several assumptions that undermine their argument. Neuroenhancement (...) does raise several ethical concerns, but safety and research in this area pose no unique difficulties. (shrink)

In this article I argue that vagueness concerning consent to post‐mortem organ donation causes considerable harm in several ways. First, the information provided to most people registering as organ donors is very vague in terms of what is actually involved in donation. Second, the vagueness regarding consent to donation increases the distress of families of patients who are potential organ donors, both during and following the discussion about donation. Third, vagueness also increases the chances that the patient's intention to donate (...) will not be fulfilled due to the family's distress. Fourth, the consequent reduction in the number of donated organs leads to avoidable deaths and increased suffering among potential recipients, and distresses them and their families. There are three strategies which could be used to reduce the harmful effects of this vagueness. First, recategorizing the reasons (commonly referred to as ‘overrules’ under the current system) given by families who refuse donation from registered donors would bring greater clarity to donation discussions. Second, people who wish to donate their organs should be encouraged to discuss their wishes in detail with their families, and to consider recording their wishes in other ways. Finally, the consent system for organ donation could be made more detailed, ensuring both that more information is provided to potential donors and that they have more flexibility in how their intentions are indicated; this last strategy, however, could have the disadvantage of discouraging some potential donors from registering. (shrink)

This article captures and critiques a recurring and prominent political argument against animal welfare improvements in Switzerland which we term the “ranking argument”. This states that Swiss animal welfare law ranks among the strictest in the world, therefore no improvements are called for. This argument was advanced three times by Swiss government authorities in 2022 alone, but also in a case dating back to 1984, to advise the electorate on popular initiatives aiming at animal welfare improvements. We argue that, while (...) the argument commits a fallacy of relative privation and is ethically dubious, it can be deployed to great effect by agents opposed to norm change in animal welfare regulation. We conclude with some thoughts on how the ranking argument can and should be challenged in public discourse. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

Several bioethical topics received a great deal of news coverage here in Scotland in 2009. Three important issues with transatlantic connections are the swine flu outbreak, which was handled very differently in Scotland, England and America; the US debate over healthcare reform, which drew the British NHS into the controversy; and the release to Libya of the Lockerbie bomber, which at first glance might not seem particularly bioethical, but which actually hinged on the very public discussion of the prisoner’s medical (...) records. On a national level, there have been attempts in both Scotland and England to change the law on assisted suicide, where success looks more likely than ever. This paper will discuss each of these issues, and hopefully raise awareness of how these issues were dealt with in the UK and its component countries. (shrink)

The definition of ‘patient’ is commonly taken for granted and considered as obvious, but the term is rather underconceptualised in the literature. In this paper, it will be argued that the criterion of suffering can be considered a sufficient criterion for a parent to be considered a secondary patient when their seriously ill child is receiving medical care (i.e. not necessarily the parents themselves) – these parents are sufferers in virtue of the suffering of others. The nature of parental and (...) child health and well-being is clearly relational and bidirectional, thus also a bidirectional and relational integration of parental and paediatric patient care is necessary. A genuine expansion of the concept ‘patient’ to parents, both practically and theoretically, can help to bring awareness to the closely intertwining, interacting and interdependent vulnerabilities of both parties, the potential conflicts of interests involved, and also to demand support and reduce hurdles, for example, in reimbursement by health insurers. Treating parents as patients will (1) help the affected child (the primary patient), as unhealthy and/or mentally unstable parents are likely to negatively influence a child's treatment and (2) prevent the parents (the secondary patients) from becoming primary patients themselves due to their suffering because of their child's illness. (shrink)

Many people have moral qualms about embryo research, feeling that embryos must deserve some kind of protection, if not so much as is afforded to persons. This paper will show that these qualms serve to camouflage motives that are really prudential, at the cost of also obscuring the real ethical issues at play in the debate concerning embryo research and therapeutic cloning. This in turn leads to fallacious use of the Actions/Omissions Distinction and ultimately neglects the duties that we have (...) towards future persons. (shrink)

IntroductionThis editorial introduces this special issue of the Journal of Bioethical Inquiry on global health by presenting an analysis of the ethical implications of the Glasgow effect, the curious phenomenon whereby inhabitants of Scotland’s largest city have substantially higher mortality rates than their counterparts in similar British cities, despite adjustment for factors such as socioeconomic status, obesity, smoking, drinking, and drug use. The Glasgow effect represents a health inequality that cannot currently be addressed, as its causes are as yet unidentified. (...) As such, it raises several ethical issues. Parents may even have an ethical obligation to move their children away from Glasgow to prevent them being affected by the effect.The Glasgow effect is perhaps the most perplexing health inequality. It represents unfairness with an unknown cause and is composed of several different elements. The most basic fact is that socioeconomically disadvantaged people are worse of .. (shrink)

This special issue of the Journal of Bioethical Inquiry focuses on global health and associated bioethical concerns. As a concept, global health broadens the focus from national public health situations to the international sphere and concerns itself with the health of all humans, but particularly those in developing countries who suffer from severe health inequalities. However, there is one sense in which global health is lacking: Its primary focus is on those currently alive and, in some cases, their offspring. But (...) what about future generations, who may suffer from even more pronounced inequalities? In this editorial, we consider the bioethical implications of failing to adopt an intergenerational concept of global health.One of the major strengths of global health is its emphasis on disenfranchised populations who do not enjoy the advantages of the medical systems of developed countries. By drawing attention to the issues that affect billions of disadvantaged people around the world .. (shrink)

Why devote an issue of an ethics journal to prison medicine? Why conduct ethics research in prisons in the first place? In this editorial, we explain why prison ethics research is vitally important and illustrate our argument by introducing and briefly discussing the fascinating papers in this special issue of the Journal of Bioethical Inquiry.Ethics is often regarded as a theoretical discipline. This is in large part due to ethics’ origin as a type of moral philosophy, which is frequently associated (...) with armchair theorising about principles and virtues and seems to have little connection with the “real world.” However, medical ethics and bioethics are increasingly becoming empirical disciplines. The “empirical turn” in ethics has led to an explosion in field research in ethics that uses the empirical methods of sociology, anthropology, and the health sciences to investigate a variety of ethical issues. The results of such research are often of much more value than purely theoret. (shrink)

Healthcare cybersecurity is increasingly targeted by malicious hackers. This sector has many vulnerabilities and health data is very sensitive and valuable. Consequently, any damage caused by malicious intrusions is particularly alarming. The consequences of these attacks can be enormous and endanger patient care. Amongst the already-implemented cybersecurity measures and the ones that need to be further improved, this paper aims to demonstrate how penetration tests can greatly benefit healthcare cybersecurity. It is already proven that this approach has enforced cybersecurity in (...) other sectors. However, it is not popular in healthcare since many prejudices still surround the hacking practice and there is a lack of education on hackers’ categories and their ethics. The present analysis aims to comprehend what hacker ethics is and who ethical hackers are. Currently, hacker ethics has the status of personal ethics; however, to employ penetration testers in healthcare, it is recommended to draft an official code of ethics, comprising principles, standards, expectations, and best practices. Additionally, it is important to distinguish between malicious hackers and ethical hackers. Amongst the latter, penetration testers are only a sub-category. Acknowledging the subtle differences between ethical hackers and penetration testers allows to better understand why and how the latter can offer their services to healthcare facilities. (shrink)

[V]isibility is central to the shaping of political, medical, and socioeconomic decisions. Who will be treated—how and where—are the central questions whose answers are often entwined with issues of visibility … [and] the effects that media visibility has on the perception of particular bodies .In a documentary entitled Paris: The Luminous Years , writer Janet Flanner describes the intense friendship of Pablo Picasso and Georges Braque. Both were inspired by Paul Cézanne and his retrospective at the 1907 Salon d’Automne—which, according (...) to Paris: The Luminous Years, marked in Janus-like fashion the end of the 19th and the beginning of the 20th centuries in art. Flanner tells of the frequent visits between the two painters, where they “talked and talked … two or three months that they just spent gabbling, gabbling.” And from their camaraderie and gabble emerged someth .. (shrink)

In this article we summarise some previously described proposals for ethical governance of autonomous vehicles, critique them, and offer an alternative solution. Rather than programming cars to react to crash situations in the same way as humans, having humans program pre-set responses for a wide range of different potential scenarios, or applying particular ethical theories, we suggest that decisions should be made jointly between humans and cars. Given that humans lack the requisite processing capacity, and computers lack the necessary ethical (...) capacity, the medical paradigm of advance care planning can be retooled for this new context. Advance car-crash planning provides a way to combine humans’ ethical preferences with the advanced data processing capacities of computers to enable shared decision making in collision situations. (shrink)

Oncologists frequently have to break bad news to patients. Although they are not normally the ones who tell patients that they have cancer, they are the ones who have to tell patients that treatment is not working, and they are almost always the ones who have to tell them that they are going to die and that nothing more can be done to cure them. Perhaps the most difficult cases are those where further treatment is almost certainly futile, but there (...) remains an extremely slim chance of yet more aggressive treatment having a near-miraculous effect. In such situations, it can be difficult for the oncologist to decide how to explain things to the patient, and how much to tell them. It can also be very difficult to achieve the correct balance between respecting the patient’s autonomy and not exposing them to harm. This paper examines an example of one such case and makes three suggestions. First, that respecting autonomy cannot be achieved by maximising information-sharing only to deny patients the chance to make decisions based on that information; second, that the simplistic application of the principles of nonmaleficence and respect for autonomy can lead to erroneous conclusions about the most ethical course of action; and third, that there is an extra reason, in addition to respecting patients’ autonomy, for attempting near-futile last-ditch interventions: when treating rare conditions, useful evidence can be generated that will benefit future patients. (shrink)

The reward infrastructure in science centres on publication, in which journal editors play a key role. Reward distribution hinges on value assessments performed by editors, who draw from plural value systems to judge manuscripts. This conceptual paper examines the numerous biases and other factors that affect editorial decisions. Hybrid and often conflicting value systems contribute to an infrastructure in which editors manage reward through editorial review, commissioned commentaries and reviews and weighing of peer review judgments. Taken together, these systems and (...) processes push the editor into a role resembling censorship. Editors and authors both experience this phenomenon as an unintended side-effect of the reward infrastructure in science. To work towards a more constructive editor-author relationship, we propose a conversation, an exchange between editor and author in which value is collectively assessed as obligatory passage points in the publishing process are traversed. This paper contributes to the discourse on editorial practices by problematising editorial paradigms in a new way and suggesting solutions to entrenched problems. (shrink)

In the context of deceased organ donation, donors are routinely tested for HIV, to check for suitability for organ donation. This article examines whether a donor’s HIV status should be disclosed to the donor’s next of kin.On the one hand, confidentiality requires that sensitive information not be disclosed, and a duty to respect confidentiality may persist after death. On the other hand, breaching confidentiality may benefit third parties at risk of having been infected by the organ donor, as it may (...) permit them to be tested for HIV and seek treatment in case of positive results.We conclude that the duty to warn third parties surpasses the duty to respect confidentiality. However, in order to minimize risks linked to the breach of confidentiality, information should be restrained to only concerned third parties, that is, those susceptible to having been infected by the donor. (shrink)

Matters of Certainty and Conviction. In the section on certainty, Shaw puts forth a proof of the external world, and considers topics such as change, difference, time, consciousness, substance and quality.

We all now know that the novel coronavirus is anything but a common cold. The pandemic has created many new obligations for all of us, several of which come with serious costs to our quality of life. But in some cases, the guidance and the law are open to a degree of interpretation, leaving us to decide what is the ethical course of action. Because of the high cost of some of the obligations, a conflict of interest can arise between (...) what we want to do and what it is right to do. And so, some people choose to respect only the letter of the law, but not the spirit, or not to respect even the spirit of the guidelines. This paper identifies and describes the new obligations imposed on us all by the pandemic, considers their costs in terms of the good life, and provides an ethical analysis of two personal and two public cases in terms of the letter and spirit of the guidance and legislation. (shrink)

Ideally, guidelines reflect an accepted position with respect to matters of concern, ranging from clinical practices to researcher behaviour. Upon close reading, authorship guidelines reserve authorship attribution to individuals fully or almost fully embedded in particular studies, including design or execution as well as significant involvement in the writing process. These requirements prescribe an organisation of scientific work in which this embedding is specifically enabled. Drawing from interviews with nutrition scientists at universities and in the food industry, we demonstrate that (...) the organisation of research labour can deviate significantly from such prescriptions. The organisation of labour, regardless of its content, then, has consequences for who qualifies as an author. The fact that fewer food industry employees qualify is actively used by the food industry to manage the credibility and ownership of their knowledge claims as allonymous science: the attribution of science assisted by authorship guidelines blind to all but one organisational frame. (shrink)