David M. Shaw

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.

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.

Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the people who could benefit from organs should be provided to families before they make a decision about donation or attempt to over-rule it.

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.

A new Swiss law requires that any research involving humans must aim to answer "a relevant research question". This paper explains the relevance of the relevance criterion in research, analyses the Swiss and British guidelines on relevance, and proposes a framework for researchers and REC members that enables a clearer conception of the role of relevance in research. We conclude that research must be either scientifically or societally beneficial in order to qualify as relevant, and RECs therefore cannot avoid reviewing the scientific aspects of proposed studies. Normally only scientifically relevant studies can be of benefit to society, but research of low scientific relevance can nonetheless be relevant to society if it forms part of the education of new doctors and scientists.

Doctors at four German hospitals have been suspended from their posts following internal investigations which alleged that they had been manipulating the organ transplant allocation system in order to help their patients get donor livers more quickly. It is alleged that doctors exaggerated the severity of their patients’ conditions so that they would be accorded higher priority for receiving organs, but there may also have been manipulation of medical records, deception of patients and potential harm to patients both within Germany and across the EU. There has been significant public reaction to these events. The reported events require analysis as there may be several lessons for the UK context; doing so requires analyzing the alleged events in terms of the issues raised in a hypothetical manner.

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

Cryoethics is a new theme within bioethics (see bioethics) concerned with the ethics of cryonic storage. Cryonics, which is also erroneously referred to as “cryogenic” technology, offers people the option of having their bodies or brain-stems preserved at very low temperatures after death in order to be revived at some point in the future when technology is sufficiently advanced to enable reanimation, and possibly immortality. The main issues in cryoethics center around whether it is ethical to use this technology, and whether it is prudent to do so. While there are several prudential and ethical arguments against cryonic storage, there is only one argument in favor, but it is quite powerful: the possibility of cheating death for a few years, or even forever if technology advances enough in the time before revival (Shaw 2009).

Kihlbom has recently argued that a system of seeking negatively informed consent might be preferable in some cases to the ubiquitous informed consent model. Although this theory is perhaps not powerful enough to supplant informed consent in most settings, it lends strength to Evans’ and Hungin’s proposal that it can be ethical to prescribe placebos rather than "active" drugs. This paper presents an argument for using negatively informed consent for the specific purpose of authorising the use of placebos in clinical contexts.

This paper examines the legal justification for water fluoridation (WF) in the United Kingdom. While current legislation clearly permits WF, there is a degree of obfuscation concerning whether the practice amounts to medication, and were it to be acknowledged that fluoridated water constitutes a medicine, the legality of the practice would not be so obvious. It is concluded that an accurate and honest interpretation of the law would result in the conclusion that fluoridation does constitute medication, as it seeks to improve health by the addition of a chemical.

In recent years there have been many revelations about ghost authors, who contribute to publications but are not credited, and guest authors, who do not contribute but are credited. Most medical and many other journals adhere to the authorship standards set by the International Committee of Medical Journal Editors (ICMJE), which were designed in part to combat the phenomena of ghost and guest authorship. However, the current criteria set for authorship by the ICMJE have their own problems. This brief paper illustrates these problems with an example, and concludes that the current ICMJE definition of authorship is both illogical and unethical.

Despite the heavy emphasis on consent in the ethical code of the General Dental Council (GDC), it is often overlooked that communication difficulties between patient and dentist can cause problems in maintaining genuine consent during interventions. Inconsistencies in the GDC's Standards for dental professionals and Principles of patient consent guidelines are examined in this article, and it is concluded that more emphasis must be placed on continuous consent as an ongoing process essential to maintaining patients' dignity in dentistry.

Hematopoietic stem cell transplantation is a widely accepted practice in the United Kingdom (UK). The relatively liberal UK law permits donation both within families and from strangers, and even allows the creation of “saviour siblings” who are brought into being with the specific intent of having them donate stem cells to save other members of their family. This chapter describes the regulation of HSCT in the UK and highlights some ethical issues related to discrimination against some categories of potential donors, the accuracy of the information provided to potential donors, and the controversy concerning saviour siblings.

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.

It is widely accepted in clinical ethics that removing a patient from a ventilator at the patient’s request is ethically permissible. This constitutes voluntary passive euthanasia. However, voluntary active euthanasia, such as giving a patient a lethal overdose with the intention of ending that patient’s life, is ethically proscribed, as is assisted suicide, such as providing a patient with lethal pills or a lethal infusion. Proponents of voluntary active euthanasia and assisted suicide have argued that the distinction between killing and letting die is flawed and that there is no real difference between actively ending someone’s life and "merely" allowing them to die. This paper shows that, although this view is correct, there is even less of a distinction than is commonly acknowledged in the literature. It does so by suggesting a new perspective that more accurately reflects the moral features of end-of-life situations: if a patient is mentally competent and wants to die, his body itself constitutes unwarranted life support unfairly prolonging his or her mental life.

Although more women continue to enter the medical profession, disparities between the sexes in academic medicine persist. This “gender gap” has implications for academic advancement. In 2006, Jagsi and colleagues reported that, although the proportion of women among first and last authors in the United States had significantly increased since 1970, women still represented a minority of the authors of original research and guest editorials in six prominent medical journals.1 In a related 2008 study, Jagsi and colleagues found a substantial increase in women’s representation on editorial boards and as editors-in-chief of several prominent journals.2 We collected more recent data about the gender distribution of authors, members of editorial boards, and peer reviewers for prominent medical journals. Using data from 2010-2011, we determined the proportion of women who were authors of original research or guest editorials, members of editorial boards, or reviewers at six major general medical journals: the Annals of Internal Medicine (Ann Intern Med), the British Medical Journal (BMJ), JAMA, JAMA Internal Medicine, the Lancet, and the New England Journal of Medicine (NEJM).

Institutional review boards (IRBs) have a reputation for impeding research. This reputation is understandable inasmuch as many studies are poorly designed, exploit participants, or do not ask a relevant question , and it is entirely proper that IRBs should reject such proposals. However, IRBs also frequently reject or tamper with perfectly sound and relevant studies in the name of protecting participants from harm, in accordance with the widely accepted message that “clinical research is justified only when participants are protected from excessive risks”. Here, I argue that IRBs should never reject a study because it poses too high a risk to participants, and that their role should be confined to ensuring that risks and any potential benefits are fully explained to potential participants. Everyone should have the right to participate in research without paternalistic decisions about risk being made on their behalf.

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.