David Shaw

It is clearly unethical for the NHS to tell people that they will die sooner unless they pay for private treatment, and then to tell them that if they pay for private treatment they will have to pay the NHS for its insufficient service. This is all the more true if people in other parts of the country are receiving all the drugs they need for the same condition on the NHS. Patients who discover that the NHS care that they have paid for will not keep them alive should be able to supplement their care privately if they can afford it, without the added burden and insult of being told their independently inadequate NHS care will cease unless they pay for it too. Mired in self-contradiction as it is, the NHS’ "anti-two-tier" policy must change.

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.

One of the many problems posed by the collective effort to tackle COVID-19 is non-compliance with restrictions. Some people would like to obey restrictions but cannot due to their job or other life circumstances; others are not good at following rules that restrict their liberty, even if the potential consequences of doing so are repeatedly made very clear to them. Among this group are a minority who simply do not care about the consequences of their actions. But many others fail to accurately perceive the harms that they might be causing. One of the main reasons for this is that the harms done by transmitting COVID-19 to someone else are morally distant from the agent, particularly in cases where infection is asymptomatic. In this paper, I describe seven different aspects of moral distance in the context of COVID-19, explore how they affect motivation to obey restrictions, and suggest several ways in which such moral distance can be reduced — primarily through enhanced-contact tracing that makes it clear to individuals and the public precisely who they could be harming and how. There are no data in this work.

In this paper we focus on how automated vehicles can reduce the number of deaths and injuries in accident situations in order to protect public health. This is actually a problem not only of public health and ethics, but also of big data—not only in terms of all the different data that could be used to inform such decisions, but also in the sense of deciding how wide the scope of data should be. We identify three key different types of data, including basic data, advanced data and preference data, provide an ethical analysis of the use of these different types of data and of different ways of prioritizing between pedestrians and passengers, and propose four rules that can help set ethical priorities for ethical data use and decision making by automated vehicles.

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.

Background Structured training in research integrity, research ethics and responsible conduct of research is one strategy to reduce research misconduct and strengthen reliability of and trust in scientific evidence. However, how researchers develop their sense of integrity is not fully understood. We examined the factors and circumstances that shape researchers’ understanding of research integrity. Methods This study draws insights from in-depth, semi-structured interviews with 33 researchers in the life sciences and medicine, representing three seniority levels across five research universities in Switzerland. Results The results of this study indicate that early education, moral values inculcated by the family and participation in team sports were the earliest influences on notions of honesty, integrity and fairness among researchers. Researchers’ personality traits, including degree of ambition and internal moral compass, were perceived as critical in determining the importance they attributed to conducting research with high ethical standards. Positive and negative experiences in early research life also had a significant impact on their views regarding research integrity. Two thirds of the study participants had not received any formal training in research integrity. Their awareness of training opportunities at their institutions was also limited. Conclusion Age-appropriate development of honesty and integrity starts as early as primary education. Research integrity training should be offered from the bachelors level and continue throughout the entire professional life of researchers. Although these courses may not imbue researchers with integrity itself, they are essential to improving the research culture, reinforcing integrity norms, and discouraging researchers who lack personal integrity from engaging in research misconduct.

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.

The aim of this paper is to analyze the attitudes and reactions of researchers towards an authorship claim made by a researcher in a position of authority who has not made any scientific contribution to a manuscript or helped to write it. This paper draws on semi-structured interviews conducted with 33 researchers at three seniority levels working in biomedicine and the life sciences in Switzerland. This manuscript focuses on the analysis of participants’ responses when presented with a vignette describing an authorship assignment dilemma within a research group. The analysis indicates that researchers use a variety of explanations and arguments to justify inclusion of what guidelines would describe as honorary or guest authorship. Fuzzy parameters such as “substantial contribution” lead to varied interpretation and consequently convenient application of authorship guidelines in practice. Factors such as the culture of the research group, the values and practice shaped by the research leaders, the hierarchy and relative positions of power within research institutions, and the importance given to publications as the currency for academic success and growth tend to have a strong influence on authorship practice. Unjustified authorship assignment practices can be reduced to some extent by creating empowering research cultures where each researcher irrespective of his/her career stage feels empowered to confidently raise concerns without fearing adverse impact on their professional lives. However, individual researchers and research institutions currently have limited influence on established methods for evaluating academic success, which is primarily based on the number of high impact publications.

The aim of this paper is to analyze the attitudes and reactions of researchers towards an authorship claim made by a researcher in a position of authority who has not made any scientific contribution to a manuscript or helped to write it. This paper draws on semi-structured interviews conducted with 33 researchers at three seniority levels working in biomedicine and the life sciences in Switzerland. This manuscript focuses on the analysis of participants’ responses when presented with a vignette describing an authorship assignment dilemma within a research group. The analysis indicates that researchers use a variety of explanations and arguments to justify inclusion of what guidelines would describe as honorary or guest authorship. Fuzzy parameters such as “substantial contribution” lead to varied interpretation and consequently convenient application of authorship guidelines in practice. Factors such as the culture of the research group, the values and practice shaped by the research leaders, the hierarchy and relative positions of power within research institutions, and the importance given to publications as the currency for academic success and growth tend to have a strong influence on authorship practice. Unjustified authorship assignment practices can be reduced to some extent by creating empowering research cultures where each researcher irrespective of his/her career stage feels empowered to confidently raise concerns without fearing adverse impact on their professional lives. However, individual researchers and research institutions currently have limited influence on established methods for evaluating academic success, which is primarily based on the number of high impact publications.

We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully anonymized. Thematic analysis was applied in order to examine stable patients’ attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients’ views on synthetic biology and into the kind of fears triggered by the term “synthetic biology.” Our results show that clear and concrete information can change patients’ initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology.

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.

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.

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.

Beauchamp and Childress’ definition of autonomous decision‐making includes the conditions of intentionality, understanding, and non‐control. In genetics, however, a relational conception of autonomy has been increasingly recognized. This article aims to empirically assess aspects of social influence in genetic testing decision‐making and to connect these with principlist and relational theories of autonomy. We interviewed 18 adult genetic counsellees without capacity issues considering predictive genetic testing for cancer predisposition for themselves and two counselling physicians in Switzerland. We conducted a qualitative analysis, building on a grounded theory study about predictive genetic testing decision‐making. We found that some participants agreed to predictive genetic testing predominantly because relatives wanted them to do it, with some even acting contrary to their own convictions. Others, in contrast, based their decision on purely individualistic reasons but expressed difficulties in explaining their decision to their social environment. Healthcare professionals had a critical influence on decision‐making in many cases without being manipulative, as perceived by counsellees. Still, cases of coercion and social pressure occurred within social relationships. In conclusion, predictive genetic testing decision‐making includes relational and individualistic aspects, and both are compatible with autonomous decision‐making. While the principlist and relational notions of autonomy compete on a theoretical level, they are two sides of the same coin when used as analytical lenses for genetic testing decision‐making. Social acceptance of refusal of testing should be improved to mitigate social pressure. Individuals should be encouraged to decide for themselves how much their social environment influences their decision regarding predictive genetic testing.

Objectives The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. Methods We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline and the global health nonprofit organisation PATH and its Malaria Vaccine Initiative program,. The respondents included teams from four clinical research centres and various collaborating partners. This paper analyses responses to the question: What is Health Research for Development? Results Based on the stakeholders’ experience the respondents offered many ways of defining Health Research for Development. The responses fell into four broad themes: i) Equitable Partnerships; ii) System Sustainability; iii) Addressing Local Health Targets, and iv) Regional Commitment to Benefit Sharing. Conclusion Through defining Health Research for Development six key learning points were generated from the four result themes: 1) Ensure there is local research leadership working with the collaborative partnership, and local healthcare system, to align the project agenda and activities with local research and health priorities; 2) Know the country-specific context - map the social, health, legislative and political setting; 3) Define an explicit development component and plan of action in a research project; 4) Address the barriers and opportunities to sustain system capacity. 5) Support decentralised health system decision-making to facilitate the translation pathway; 6) Govern, monitor and evaluate the development components of health research partnerships. Overall, equity and unity between partners are required to deliver health research for development.

Precision medicine is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning healthcare systems. Alongside its promises, PM also entails the risk of exacerbating healthcare inequalities, in particular between ethnoracial groups. One often-neglected underlying reason why this might happen is the impact of structural racism on PM initiatives. Raising awareness as to how structural racism can influence PM initiatives is paramount to avoid that PM ends up reproducing the pre-existing health inequalities between different ethnoracial groups and contributing to the loss of trust in healthcare by minority groups. We analyse three nodes of a process flow where structural racism can affect PM’s implementation. These are: the collection of biased health data during the initial encounter of minority groups with the healthcare system and researchers, the integration of biased health data for minority groups in PM initiatives and the influence of structural racism on the deliverables of PM initiatives for minority groups. We underscore that underappreciation of structural racism by stakeholders involved in the PM ecosystem can be at odds with the ambition of ensuring social and racial justice. Potential specific actions related to the analysed nodes are then formulated to help ensure that PM truly adheres to the goal of leaving no one behind, as endorsed by member states of the United Nations for the 2030 Agenda for Sustainable Development. Structural racism has been entrenched in our societies for centuries and it would be naïve to believe that its impacts will not spill over in the era of PM. PM initiatives need to pay special attention to the discriminatory and harmful impacts that structural racism could have on minority groups involved in their respective projects. It is only by acknowledging and discussing the existence of implicit racial biases and trust issues in healthcare and research domains that proper interventions to remedy them can be implemented.

BackgroundA patient who fulfils the due diligence requirements for euthanasia, and is medically suitable, is able to donate his organs after euthanasia in Belgium, the Netherlands and Canada. Since 2012, more than 70 patients have undergone this combined procedure in the Netherlands. Even though all patients who undergo euthanasia are suffering hopelessly and unbearably, some of these patients are nevertheless willing to help others in need of an organ. Organ donation after euthanasia is a so-called donation after circulatory death (DCD), Maastricht category III procedure, which takes place following cardiac arrest, comparable to donation after withdrawal of life sustaining therapy in critically ill patients. To minimize the period of organ ischemia, the patient is transported to the operating room immediately after the legally mandated no-touch period of 5 min following circulatory arrest. This means that the organ donation procedure following euthanasia must take place in the hospital, which appears to be insurmountable to many patients who are willing to donate, since they already spent a lot of time in the hospital. Case presentationThis article describes the procedure of organ donation after euthanasia starting at home (ODAEH) following anesthesia in a former health care professional suffering from multiple system atrophy. This case is unique for at least two reasons. He spent his last conscious hours surrounded by his family at home, after which he underwent general anaesthesia and was intubated, before being transported to the hospital for euthanasia and organ donation. In addition, the patient explicitly requested the euthanasia to be performed in the preparation room, next to the operating room, in order to limit the period of organ ischemia due to transport time from the intensive care unit to the operating room. The medical, legal and ethical considerations related to this illustrative case are subsequently discussed.ConclusionsOrgan donation after euthanasia is a pure act of altruism. This combined procedure can also be performed after the patient has been anesthetized at home and during transportation to the hospital.

In this article, I describe and analyse the proposed new International Committee of Medical Journal Editors form for disclosing conflicts of interest and conclude that it has many flaws. The form does not mention ‘conflicts of interest’ even once in either its body or its title, it introduces a conceptually confused categorisation of different potential conflicts and it ignores future conflicts and intellectual biases. Finally, many of the authors of the new form have themselves failed to declare relevant potential conflicts of interest.

This article provides a systematic analysis of the proposal to use Covid‐19 vaccination status as a criterion for admission of patients with Covid‐19 to intensive care units (ICUs) under conditions of resource scarcity. The general consensus is that it is inappropriate to use vaccination status as a criterion because doing so would be unjust; many health systems, including the UK National Health Service, are based on the principle of equality of access to care. However, the analysis reveals that there are several unique features of Covid vaccination status in the context of a pandemic that make this issue disanalogous to cases (such as lung cancer caused by smoking) discussed previously. First, there is equality in access to care at the point of vaccination; the unvaccinated refuse the offer of preventive care when they decline vaccination, weakening their claim to ongoing care if they become ill (this is qualitatively different from ‘poor lifestyle choices’ such as smoking). Second, the decision of one person to refuse vaccination substantially increases the risk that they will become seriously ill and need ICU care; the person who chooses not to get vaccinated thus potentially increases the pressure on intensive care bed provision, as well as increasing the risk that he or she will infect others who in turn might end up needing ICU care. Third, justice cuts both ways, and giving unvaccinated patients equal priority may itself be unjust when other patients have reduced their risk of ending up on the ICU by getting vaccinated.

Emerging biotechnology may soon allow the creation of genetically human organs inside animals, with non-human primates and pigs being the best candidate species. This prospect raises the question of whether creating organs in primates in order to then transplant them into humans would be more acceptable than using them for research. In this paper, we examine the validity of the purported moral distinction between primates and other animals, and analyze the ethical acceptability of using primates to create organs for human use.