Researchers often refer to “research integrity”, “scientific integrity”, “research misconduct”, “scientific misconduct” and “research ethics”. However, they may use some of these terms interchangeably despite conceptual distinctions. The aim of this paper is to clarify what is signified by several key terms related to research integrity, and to suggest clearer conceptual delineation between them. To accomplish this task, it provides a conceptual analysis based upon definitions and general usage of these phrases and categorization of integrity-breaching behaviours in literature and guidelines, (...) including clarification of the different domains and agents involved. In the first part of the analysis, following some initial clarifications, I explore the distinction between internal and external rules of integrity. In the second part, I explore the distinction between integrity and lack of misconduct, before suggesting a recategorisation of different types of integrity breach. I conclude that greater clarity is needed in the debate on research integrity. Distinguishing between scientific and research integrity, reassessing the relative gravity of different misbehaviours in light of this distinction, and recognising all intentional breaches of integrity as misconduct may help to improve guidelines and education. (shrink)

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. (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)

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. (shrink)

In this paper I use normative analysis to explore the curious and seemingly singular phenomenon whereby some dog owners deny the physical and moral facts about a situation where it is claimed their dog harmed or irritated others. I define these as epistemic and ethical denial, respectively, and offer a tentative exploration of their implications in terms of relational autonomy and responsible behaviour in public spaces.

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)

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. (shrink)

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. (shrink)

Writers on organisational change often refer to the cosmology of Heraclitus in their work. Some use these references to support arguments for the constancy and universality of organisational change and the consignment to history of organisational continuity and stability. These writers misunderstand the scope of what Heraclitus said. Other writers focus exclusively on the idea that originated with Heraclitus that the universe is composed of processes and not of things. This idea, which has been particularly associated with Heraclitus’s thought from (...) the time of Plato, does indeed provide a rich source of insights into organisational analysis, not least the current trends towards giving proper attention to processual studies of organisational change. Yet there is some uncertainty as to whether Heraclitus actually said that the universe was composed exclusively of processes rather than things, and even if that was what he thought, he intended his ideas on flux to be understood not in isolation but in the context of other aspects of his cosmology. Writers on organisational change seldom make reference to this wider context. Heraclitus was a rational but also a religious thinker. A central element in his thought was the notion of divine Justice, which to a Greek of his era meant the order of the universe. Remote as his Olympian theology may seem today, it sets a crucial and entirely rational context for understanding his ideas about flux. It means that ideas about continuity and stability were quite as important in Heraclitus’s cosmology as his more commonly quoted ideas about change. This paper sets out an overview of Heraclitus’s philosophy, insofar as it appears to have potential relevance to organisational analysis, and discusses how far it supports or contradicts the ideas that organisational change scholars have drawn from it. (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)

The primacy in modern medical ethics of the principle of respect for autonomy has led to the widespread assumption that it is unethical to change someone’s beliefs, because doing so would constitute coercion or paternalism., In this Viewpoint we suggest that persuasion is not necessarily paternalistic and is an essential component of modern medical practice.

Cryonic suspension is a relatively new technology that offers those who can afford it the chance to be 'frozen' for future revival when they reach the ends of their lives. This paper will examine the ethical status of this technology and whether its use can be justified. Among the arguments against using this technology are: it is 'against nature', and would change the very concept of death; no friends or family of the 'freezee' will be left alive when he is (...) revived; the considerable expense involved for the freezee and the future society that will revive him; the environmental cost of maintaining suspension; those who wish to use cryonics might not live life to the full because they would economize in order to afford suspension; and cryonics could lead to premature euthanasia in order to maximize chances of success. Furthermore, science might not advance enough to ever permit revival, and reanimation might not take place due to socio-political or catastrophic reasons. Arguments advanced by proponents of cryonics include: the potential benefit to society; the ability to cheat death for at least a few more years; the prospect of immortality if revival is successful; and all the associated benefits that delaying or avoiding dying would bring. It emerges that it might be imprudent not to use the technology, given the relatively minor expense involved and the potential payoff. An adapted and more persuasive version of Pascal's Wager is presented and offered as a conclusive argument in favour of utilizing cryonic suspension. (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)

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)

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. (shrink)

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. (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)

This article highlights the often overlooked fact that doctors who respect a bereaved family's veto of a deceased patient's organ donation are complicit in the deaths of those who would have benefited from the organs in question. Respecting the veto violates the dying wish of the patient, is against the spirit of the law and contributes to the deaths of other patients.

Aim: While there is widespread agreement on the broad aspects of what constitutes a biobank, there is much disagreement regarding the precise definition. This research aimed to describe and analyse the definitions of the term biobank offered by various stakeholders in biobanking. Methods: Interviews were conducted with 36 biobanking stakeholders with international experience currently working in Switzerland. Results: The results show that, in addition to the core concepts of biological samples and linked data, the planned use of samples (including sharing) (...) is held to be a key criterion. It also emerges that some researchers avoid the term in order to circumvent certain regulatory guidelines, including informed consent requirements. Conclusion: Developments in the field of biobanking will be complicated if researchers are unaware, or deny that their collection is a biobank. A clear definition of the term is therefore an important step towards fostering collaboration amongst researchers, enabling them to more easily identify potential sources of samples. (shrink)

This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients’ attitudes towards participating in a fictitious first-in-human trial of a novel intervention. We focused on an in-depth analysis of those statements and explanations that indicated the existence of psychological factors impairing decision-making capacity. Three main themes emerged: insufficient comprehension of the (...) inherent logic of clinical trials, the recourse to trust over comprehension, and visceral factors that override deliberative process. Overall, our results indicate a limited psychological capacity on the part of stable patients to meet the requirements of informed consent as set by Declaration of Helsinki. A redesigned informed consent procedure should take account of these psychological realities. (shrink)

Homeopathic medicine is based on the two principles that “like cures like” and that the potency of substances increases in proportion to their dilution. In November 2009 the UK Parliament’s Science and Technology Committee heard evidence on homeopathy, with several witnesses arguing that homeopathic practice is “unethical, unreliable, and pointless”. Although this increasing scepticism about the merits of homeopathy is to be welcomed, the unethical effects of funding homeopathy on the NHS are even further-reaching than has been acknowledged.

This paper re-evaluates euthanasia and assisted suicide from the perspective of eudaimonia, the ancient Greek conception of happiness across one’s whole life. It is argued that one cannot be said to have fully flourished or had a truly happy life if one’s death is preceded by a period of unbearable pain or suffering that one cannot avoid without assistance in ending one’s life. While death is to be accepted as part of life, it should not be left to nature to (...) dictate the way we die, and it is fundamentally unjust to grant people liberal latitude in how they live their lives while granting them little control over the conclusion of their life narratives. Three objections to this position are considered and rejected; the paper also offers an explanation of why we think killing can be a benefit. Ultimately, euthanasia may be necessary in some cases in order to achieve eudaimonia. (shrink)

The various problems associated with co-authorship of research articles have attracted much attention in recent years. We believe that this growing awareness is a very welcome development. However, we will argue that the particular and increasing importance of authorship and the harmful implications of current practices of research authorship for junior researchers have not been emphasised enough. We will use the case of our own research area to illustrate some of the pitfalls of current publishing practices—in particular, the impact on (...) the evaluation of one’s work in the area of employment or funding. Even where there are explicit guidelines, they are often disregarded. This disregard, which is often exemplified through the inflation of co-authorship in some research areas, may seem benign to some of us; but it is not. Attribution of co-authorship for reasons other than merit in relation to the publication misrepresents the work towards that publication, and generates unfair competition. We make a case for increasing awareness, for transparency and for more explicit guidelines and regulation of research co-authorship within and across research areas. We examine some of the most sensitive areas of concern and their implications for researchers, particularly junior ones, and we suggest several strategies for future action. (shrink)

Advance directives (ADs), which are also sometimes referred to as ‘living wills’, are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the doctrine of (...) necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs’ emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity. (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 'Benefit, Disability and the Non-Identity Problem', Hallvard Lillehammer uses the case of a couple who chose to have deaf children to argue against the view that impartial perspectives can provide an exhaustive account of the rightness and wrongness of particular reproductive choices. His conclusion is that the traditional approach to the non-identity problem leads to erroneous conclusions about the morality of creating disabled children. This paper will show that Lillehammer underestimates the power of impartial perspectives and exaggerates the ethical (...) force of partial perspectives, which in turn commits him to providing weak justifications for the choice made by the couple in his example case. (shrink)

In this paper, we propose and defend three economic arguments for permitting assisted dying. These arguments are not intended to provide a rationale for legalising assisted suicide or euthanasia in...

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. (shrink)

This editorial provides an ethical analysis of the consent materials and other documents relating to the recent creation and birth of twin girls who had their genes edited using CRISPR-cas9 in a controversial Chinese research study. It also examines the “draft ethical principles” published by the leader of the research study. The results of the analysis further intensify serious ethical concerns about the conduct of this study.

One of the most fascinating issues in the emerging field of neuroethics is pharmaceutical cognitive enhancement. The three main ethical concerns around CE were identified in a Nature commentary in 2008 as safety, coercion and fairness; debate has largely focused on the potential to help those who are cognitively disabled, and on the issue of ‘cosmetic neurology’, where people enhance not because of a medical need, but because they want to. However, the potential for CE to improve public health has (...) been neglected. This paper examines the prospect of improving health outcomes through CE among sections of the population where health inequalities are particularly pronounced. I term this enhancement of the public’s health through CE ‘neuroenhancing health’. It holds great promise, but raises several ethical issues. This paper provides an outline of these issues and related philosophical problems. These include the potential effectiveness of CE in reducing health inequalities; issues concerning autonomy and free will; whether moral enhancement might be more effective than CE in reducing health inequalities; and the problem of how to provide such CE, including the issue of whether to provide targeted or universal coverage. (shrink)

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. (shrink)

Switzerland has very detailed laws regulating the use of animals in agriculture, entertainment and science. There are also many Swiss laws governing the genetic modification of animals, protecting human embryos, and criminalising the creation of human/animal chimeras or hybrids. Despite all these regulations, the creation of an animal embryo that will develop a human organ using induced pluripotent stem cells and the subsequent birth of the resulting chimera would actually be permitted by current legislation. While this might appear to be (...) an unhappy accident due to insufficient scientific foresight, I argue here that this loophole should not be closed, as the creation of human organs inside animals will probably be possible within 10 years, and Swiss laws would currently enable the use of this process to save human lives through this allogenic or autologous organ source. (shrink)

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. (shrink)

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. (shrink)

Business ethicists draw extensively on Aristotle’s work in defining the purpose of the business corporation. Insights from ancient authors can be valuable in illuminating contemporary issues, but we should be wary of enlisting their authority for our views without paying careful attention to what they might have intended by what they said in their own social and economic context. Business ethicists have argued that the business corporation should be a community within which its members can live a good life; that (...) its purpose should not be to maximise profits; and that it should integrate itself into a range of wider communities beyond its own boundaries and serve their interests. Aristotle would have agreed that the business corporation should not seek to make as much profit as possible, although he might have accepted that – in the light of modern developments in economic management - it should make enough profit to fund projects that would be beneficial to society. Aristotle’s view that the polis provided the setting in which people could best live a good life does not justify the claim that the business corporation can or should serve a similar purpose. Aristotle believed that people should strive for enough and not too much in several contexts, not only in acquiring wealth, but also in defining the size and scope of the community of which they should be members. Some expansive, contemporary views on the communities into which the business corporation should integrate itself are alien to Aristotle’s thinking. (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 two recent papers, Hugh McLachlan, Jacob Busch and Raffaele Rodogno have criticised my new perspective on euthanasia. Each paper analyses my argument and suggests two flaws. McLachlan identifies what he sees as important points regarding the justification of legal distinctions in the absence of corresponding moral differences and the professional role of the doctor. Busch and Rodogno target my criterion of brain life, arguing that it is a necessary but not sufficient condition and that it is not generalisable. In (...) this paper I indicate flaws in all of these criticisms, and again suggest that my perspective does add something new to the debate. (shrink)

One of the most fascinating issues in the emerging field of neuroethics is pharmaceutical cognitive enhancement (CE). The three main ethical concerns around CE were identified in a Nature commentary in 2008 as safety, coercion and fairness; debate has largely focused on the potential to help those who are cognitively disabled, and on the issue of “cosmetic neurology”, where people enhance not because of a medical need, but because they want to (as many as 25% of American students already use (...) nootropic cognitive enhancers such as ritalin). However, the potential for CE to improve public health has been neglected. This paper examines the prospect of improving health outcomes through cognitive enhancement among sections of the population where health inequalities are particularly pronounced. I term this enhancement of the public's health through CE “neuroenhancing health”. It holds great promise, but raises several ethical issues. This paper provides an outline of these issues and related philosophical problems. These include the potential effectiveness of CE in reducing health inequalities; issues concerning autonomy and free will; whether moral enhancement might be more effective than cognitive enhancement in reducing health inequalities; and the problem of how to provide such CE, including the issue of whether to provide targeted and universal coverage. (shrink)

The GDC’s recent third edition (interim) of The First Five Years places renewed emphasis on the place of professionalism in the undergraduate dental curriculum. This paper provides a brief analysis of the concepts of ethics, professionalism and fitness to practice, and an examination of the GDC’s First Five Years and Standards for Dental Professionals guidance, as well as providing an insight into the innovative ethics strand of the BDS course at the University of Glasgow. It emerges that GDC guidance is (...) flawed inasmuch as it advocates a virtue-based approach to ethics and professionalism, and fails to distinguish clearly between these two concepts. (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)

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. (shrink)

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. (shrink)

This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty ; hope as reflective uncertainty ; hope (...) as self-therapy. The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients’ medical decision-making, as well as the beneficence of hope for patients’ well-being, and for progress in research. Second, it shows how philosophical investigations—in particular Descartes—explore the phenomenon of hope and provide medical empirical research with profitable insights and tools. (shrink)