Recently there has been some discussion concerning a particular type of enhancement, namely ‘moral enhancement’. However, there is no consensus on what precisely constitutes moral enhancement, and as a result the concept is used and defined in a wide variety of ways. In this article, we develop a clarificatory taxonomy of these definitions and we identify the criteria that are used to delineate the concept. We think that the current definitions can be distinguished from each other by the criteria used (...) for determining whether an intervention is indeed moral enhancement. For example, some definitions are broad and include moral enhancement by any means, while other definitions focus only on moral enhancement by means of specific types of intervention. Moreover, for some definitions it suffices for an intervention to be aimed or intended to morally enhance a person, while other definitions only refer to ‘moral enhancement’ in relation to interventions that are actually effective. For all these differences in definitions we discuss some of their implications. This shows that definitions are significantly less descriptive and more normative than they are regularly portrayed to be. We therefore hope that the taxonomy developed in this paper and the comments on the implications for the normative debate of the variety of definitions will provide conceptual clarity in a complex and highly interesting debate. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

The debate on the ethical aspects of moral bioenhancement focuses on the desirability of using biomedical as opposed to traditional means to achieve moral betterment. The aim of this paper is to systematically review the ethical reasons presented in the literature for and against moral bioenhancement.

The relatively new practice of continuous sedation at the end of life (CS) is increasingly being debated in the clinical and ethical literature. This practice received much attention when a U.S. Supreme Court ruling noted that the availability of CS made legalization of physician-assisted suicide (PAS) unnecessary, as CS could alleviate even the most severe suffering. This view has been widely adopted. In this article, we perform an in-depth analysis of four versions of this ?argument of preferable alternative.? Our goal (...) is to determine the extent to which CS can be considered to be an alternative to PAS and to identify the grounds, if any, on which CS may be ethically preferable to PAS. (shrink)

In several jurisdictions, sex offenders may be offered chemical castration as an alternative to further incarceration. In some, agreement to chemical castration may be made a formal condition of parole or release. In others, refusal to undergo chemical castration can increase the likelihood of further incarceration though no formal link is made between the two. Offering chemical castration as an alternative to further incarceration is often said to be partially coercive, thus rendering the offender’s consent invalid. The dominant response to (...) this objection has been to argue that any coercion present in such cases is compatible with valid consent. In this article, we take a different tack, arguing that, even if consent would not be valid, offering chemical castration will often be supported by the very considerations that underpin concerns about consent: considerations of autonomy. This is because offering chemical castration will often increase the offender’s autonomy, both at the time the offer is made and in the future. (shrink)

In 2012, a new and promising gene manipulation technique, CRISPR-Cas9, was announced that seems likely to be a foundational technique in health care and agriculture. However, patents have been granted. As with other technological developments, there are concerns of social justice regarding inequalities in access. Given the technologies’ “foundational” nature and societal impact, it is vital for such concerns to be translated into workable recommendations for policymakers and legislators. Colin Farrelly has proposed a moral justification for the use of patents (...) to speed up the arrival of technology by encouraging innovation and investment. While sympathetic to his argument, this article highlights a number of problems. By examining the role of patents in CRISPR and in two previous foundational technologies, we make some recommendations for realistic and workable guidelines for patenting and licensing. (shrink)

An ‘Information Centre’ has recently been established by law which has the power to collect, collate and provide access to the medical information forall patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called ‘care.data’ scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a (...) care.data website where citizens could record their concerns regarding the collection of health-related data by the Information Centre. We have reviewed all the comments on this website up until June 2015. We have also analysed the readers’ comments on the coverage of the care.data scheme in one of the main national UK newspapers. When discussing the responses of citizens, we will make a distinction between the problems that citizens detect and the solutions they propose. The solutions that are being perceived as the most relevant ones can be summarized as follows: citizens wish to further the common good without being manipulated into doing it, while at the same time being safeguarded against various abuses. The issue of trust turns out to figure prominently. Our analysis of reactions to the scheme in no way pretends to be exhaustive, yet it provides various relevant insights into the concerns identified by citizens as well as medical professionals. These concerns, moreover, have a more general relevance in relation to other contexts of medical data-mining as well as biobank research. Our analysis also offers important pointers as to how those concerns might be addressed. (shrink)

If climate change represents a severe threat to humankind, why then is response to it characterized by inaction at all levels? The authors argue there are two complementary explanations for the lack of motivation. First, our moral judgment system appears to be unable to identify climate change as an important moral problem and there are pervasive doubts about the agency of individuals. This explanation, however, is incomplete: Individual emitters can effectively be held morally responsible for their luxury emissions. Second, doubts (...) about individual agency have become overly emphasized and fail to convincingly exonerate individuals from responsibility. This book extends the second explanation for the motivational gap, namely that the arguments for the lack of individual agency do in fact correspond to mechanisms of moral disengagement. The use of these mechanisms enables consumption elites to maintain their consumptive lifestyles without having to accept moral responsibility for their luxury emissions. (shrink)

Although climate change jeopardizes the fundamental human rights of current as well as future people, current actions and ambitions to tackle it are inadequate. There are two prominent explanations for this motivational gap in the climate ethics literature. The first maintains that our conventional moral judgement system is not well equipped to identify a complex problem such as climate change as an important moral problem. The second explanation refers to people’s reluctance to change their behaviour and the temptation to shirk (...) responsibility. We argue that both factors are at play in the motivational gap and that they are complemented by crucial moral psychological insights regarding moral disengagement, which enables emitters to dissociate self-condemnation from harmful conduct. In this way, emitters are able to maintain their profligate, consumptive lifestyle, even though this conflicts with their moral standards with respect to climate change. We provide some illustrations of how strategies of moral disengagement are deployed in climate change and discuss the relationship between the explanations for the motivational gap and moral disengagement. On the basis of this explanatory framework, we submit that there are three pathways to tackle the motivational gap and moral disengagement in climate change: making climate change more salient to emitters and affirming their self-efficacy; reconsidering the self-interested motives that necessitate moral disengagement; and tackling moral disengagement directly. (shrink)

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

Although emissions trading is embraced as a means to curb carbon emissions and to incentivize the use of renewable energy, it is also heavily contested on ethical grounds. We will assess the main fundamental objections and possible counterarguments. Although we sympathize with some of these arguments, we argue that they are unpersuasive when an emissions trading system is well designed: emissions should be accounted ‘upstream,’ on the production rather than the consumer level. Moreover, allowances should be auctioned, and regulatory measures (...) could instigate the right kind of behavior towards the environment. (shrink)

Surveys in different countries (e.g. the UK, Belgium and The Netherlands) show a marked recent increase in the incidence of continuous deep sedation at the end of life (CDS). Several hypotheses can be formulated to explain the increasing performance of this practice. In this paper we focus on what we call the ‘natural death’ hypothesis, i.e. the hypothesis that acceptance of CDS has spread rapidly because death after CDS can be perceived as a ‘natural’ death by medical practitioners, patients' relatives (...) and patients.We attempt to show that the label ‘natural’ cannot be unproblematically applied to the nature of this end-of-life practice. We argue that the labeling of death following CDS as ‘natural’ death is related to a complex set of mechanisms which facilitate the use of this practice. However, our criticism does not preclude the view that CDS may be clinically and ethically justified in many cases. (shrink)

ABSTRACTMore than a third of the world's population has no access to essential drugs. More than half of this group of people live in the poorest regions of Africa and Asia. Several factors determine the accessibility of drugs in developing countries. Hardly any medicines for tropical diseases are being developed, but even existing drugs are often not available to the patients who need them.One of the important determinants of access to drugs is the working of the patent system. This paper (...) first maps out some facts about the global patent regime that has emerged as a consequence of the conclusion of the WTO‐TRIPs Agreement in 1994. Attempts to construct a moral justification of the patent system have been based on three grounds: natural rights, distributive justice, and utilitarian arguments. This paper examines to what extent and on which grounds drug patents can be justified. The final section looks at the so‐called ‘Doha Declaration on the TRIPs Agreement and Public Health’, which was adopted by the WTO Ministerial Conference two years ago, recognising the primacy of public health over the interests of patent proprietors. (shrink)

This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.

Abating the threat climate change poses to the lives of future people clearly challenges our development models. The 2011 Human Devel- opment Report rightly focuses on the integral links between sustainability and equity. However, the human development and capabilities approach emphasizes the expansion of people’s capabilities simpliciter, which is ques- tionable in view of environmental sustainability. We argue that capabilities should be defined as triadic relations between an agent, constraints and poss- ible functionings. This triadic syntax particularly applies to climate (...) change: since people’s lives and capabilities are dependent on the environment, sus- tainable human development should also include constraining human activi- ties in order to prevent losses in future people’s well-being due to the adverse effects of exacerbated climate change. On this basis, we will advocate that the goals of sustainable human development should be informed by a fra- mework that consists of enhancing capabilities up to a threshold level, as well as constraining the functionings beyond this threshold in terms of their green- house gas emissions. (shrink)

The use of artificial intelligence (AI) in healthcare comes with opportunities but also numerous challenges. A specific challenge that remains underexplored is the lack of clear and distinct definitions of the concepts used in and/or produced by these algorithms, and how their real world meaning is translated into machine language and vice versa, how their output is understood by the end user. This “semantic” black box adds to the “mathematical” black box present in many AI systems in which the underlying (...) “reasoning” process is often opaque. In this way, whereas it is often claimed that the use of AI in medical applications will deliver “objective” information, the true relevance or meaning to the end‐user is frequently obscured. This is highly problematic as AI devices are used not only for diagnostic and decision support by healthcare professionals, but also can be used to deliver information to patients, for example to create visual aids for use in shared decision‐making. This paper provides an examination of the range and extent of this problem and its implications, on the basis of cases from the field of intensive care nephrology. We explore how the problematic terminology used in human communication about the detection, diagnosis, treatment, and prognosis of concepts of intensive care nephrology becomes a much more complicated affair when deployed in the form of algorithmic automation, with implications extending throughout clinical care, affecting norms and practices long considered fundamental to good clinical care. (shrink)

Research regarding the drivers of acceptance of clinical decision support systems by physicians is still rather limited. The literature that does exist, however, tends to focus on problems regarding the user-friendliness of CDSS. We have performed a thematic analysis of 24 interviews with physicians concerning specific clinical case vignettes, in order to explore their underlying opinions and attitudes regarding the introduction of CDSS in clinical practice, to allow a more in-depth analysis of factors underlying acceptance of CDSS. We identified three (...) general themes from the results. First, ‘the perceived role of the AI’, including items referring to the tasks that may properly be assigned to the CDSS according to the respondents. Second, ‘the perceived role of the physician’, referring to the aspects of clinical practice that were seen as being fundamentally ‘human’ or non-automatable. Third, ‘concerns regarding AI’, including items referring to more general issues that were raised by the respondents regarding the introduction of CDSS in general and/or in clinical medicine in particular. Apart from the overall concerns expressed by the respondents regarding user-friendliness, we will explain how our results indicate that our respondents were primarily occupied by distinguishing between parts of their job that should be automated and aspects that should be kept in human hands. We refer to this distinction as ‘the division of clinical labor.’ This division is not based on knowledge regarding AI or medicine, but rather on which parts of a physician’s job were seen by the respondents as being central to who they are as physicians and as human beings. Often the respondents’ view that certain core parts of their job ought to be shielded from automation was closely linked to claims concerning the uniqueness of medicine as a domain. Finally, although almost all respondents claimed that they highly value their final responsibility, a closer investigation of this concept suggests that their view of ‘final responsibility’ was not that demanding after all. (shrink)

Since the 1980s in the US and the 1990s in Europe, patenting and licensing activities by universities have massively increased. This is strongly encouraged by governments throughout the Western world. Many regard academic patenting as essential to achieve ‘knowledge transfer’ from academia to industry. This trend has far-reaching consequences for access to the fruits of academic research and so the question arises whether the current policies are indeed promoting innovation or whether they are instead a symptom of a pro-intellectual property (...) (IP) culture which is blind to adverse effects. Addressing this question requires both empirical analysis (how real is the link between academic patenting and licensing and ‘development’ of academic research by industry?) and normative assessment (which justifications are given for the current policies and to what extent do they threaten important academic values?). After illustrating the major rise of academic patenting and licensing in the US and Europe and commenting on the increasing trend of ‘upstream’ patenting and the focus on exclusive as opposed to non-exclusive licences, this paper will discuss five negative effects of these trends. Subsequently, the question as to why policymakers seem to ignore these adverse effects will be addressed. Finally, a number of proposals for improving university policies will be made. (shrink)

Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a (...) framework would be unique in the world. In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal. (shrink)

Continuous sedation until death is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness, the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book brings (...) together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in particular the doctrine of double effect. (shrink)

Doping scandals can reveal unresolved tensions between the meritocratic values of equal opportunity + reward for effort and the “talentocratic” love of hereditary privilege. Whence this special reverence for talent? We analyze the following arguments: (1) talent is a unique indicator of greater potential, whereas doping enables only temporary boosts (the fluke critique); (2) developing a talent is an authentic endeavor of “becoming who you are,” whereas reforming the fundamentals of your birth suit via artifice is an act of alienation (...) (the phony critique); (3) your (lack of) talent informs you of your proper place and purpose in life, whereas doping frustrates such an amor fati self-understanding (the fateless critique). We conclude that these arguments fail to justify a categorical preference for natural talent over integrated artifice. Instead, they illustrate the extent to which unsavory beliefs about “nature’s aristocracy” may still be at play in the moral theatre of sports. (shrink)

ABSTRACT More than a third of the world's population has no access to essential drugs. More than half of this group of people live in the poorest regions of Africa and Asia. Several factors determine the accessibility of drugs in developing countries. Hardly any medicines for tropical diseases are being developed, but even existing drugs are often not available to the patients who need them. One of the important determinants of access to drugs is the working of the patent system. (...) This paper first maps out some facts about the global patent regime that has emerged as a consequence of the conclusion of the WTO‐TRIPs Agreement in 1994. Attempts to construct a moral justification of the patent system have been based on three grounds: natural rights, distributive justice, and utilitarian arguments. This paper examines to what extent and on which grounds drug patents can be justified. The final section looks at the so‐called ‘Doha Declaration on the TRIPs Agreement and Public Health’, which was adopted by the WTO Ministerial Conference two years ago, recognising the primacy of public health over the interests of patent proprietors. (shrink)

In order to develop a model of equitable and sustainable distribution, this paper advocates integrating the ecological space paradigm and the capabilities approach. As the currency of distribution, this account proposes a hybrid of capabilities and ecological space. Although the goal of distributive justice should be to secure and promote people’s capabilities now and in the future, doing so requires acknowledging that these capabilities are dependent on the biophysical preconditions as well as inculcating the ethos of restraint. Both issues have (...) been highlighted from the perspective of the ecological space paradigm. Concerning the scope of distributive justice, the integration can combine the advantages of the ecological space paradigm regarding the allocation of the responsibilities involved in environmental sustainability with the strength of the capabilities approach regarding people’s entitlements. The pattern of distribution starts from a capability threshold. In order to achieve this threshold, ecological space should be provided sufficiently, and the remaining ecological space budget could then be distributed according to the equal per capita principle. (shrink)

The book provides an in-depth discussion on the human nature concept from different perspectives and from different disciplines, analyzing its use in the doping debate and researching its normative overtones. The relation between natural talent and enhanced abilities is scrutinized within a proper conceptual and theoretical framework: is doping to be seen as a factor of the athlete’s dehumanization or is it a tool to fulfill his/her aspirations to go faster, higher and stronger? Which characteristics make sports such a peculiar (...) subject of ethical discussion and what are the, both intrinsic and extrinsic, moral dangers and opportunities involved in athletic enhancement? This volume combines fundamental philosophical anthropological reflection with applied ethics and socio-cultural and empirical approaches. Furthermore it presents guidelines to decision- and policy-makers on local, national and international levels. (shrink)

The capabilities approach of Amartya Sen and Martha Nussbaum has become an influential viewpoint for addressing issues of social justice and human de- velopment. It has not yet, however, given adequate theoretical consideration to the requirements of environmental sustainability. Sen has focussed on the instrumental importance of human development for achieving sustainability, but has failed to consider the limits of this account, especially with respect to consumption-reduction. Nussbaum has criticised constraining material consumption for its paternalistic prescription of one particular conception (...) of the good life, without considering it as an imperative of justice. We discuss two possible extensions of the capabilities approach. First, the concept of ca- pability ceilings contains several attractive elements, but it also suffers from some shortcomings. Therefore, second, we advocate constraining people’s combinations of functionings in accordance with a personal budget which con- sists of a fair share of environmental resources. (shrink)

Since the adoption of the WTO-TRIPS Agreement in 1994, there has been significant controversy over the impact of pharmaceutical patent protection on the access to medicines in the developing world. In addition to the market exclusivity provided by patents, the pharmaceutical industry has also sought to further extend their monopolies by advocating the need for additional ‘regulatory’ protection for new medicines, known as data exclusivity. Data exclusivity limits the use of clinical trial data that need to be submitted to the (...) regulatory authorities before a new drug can enter the market. For a specified period, generic competitors cannot apply for regulatory approval for equivalent drugs relying on the originator's data. As a consequence, data exclusivity lengthens the monopoly for the original drug, impairing the availability of generic drugs. This article illustrates how the pharmaceutical industry has convinced the US and the EU to impose data exclusivity on their trade partners, many of them developing countries. The key arguments formulated by the pharmaceutical industry in favor of adopting data exclusivity and their underlying ethical assumptions are described in this article, analyzed, and found to be unconvincing. Contrary to industry's arguments, it is unlikely that data exclusivity will promote innovation, especially in developing countries. Moreover, the industry's appeal to a property rights claim over clinical test data and the idea that data exclusivity can prevent the generic competitors from ‘free-riding’ encounters some important problems: Neither legitimize excluding all others. (shrink)

Continuous sedation at the end of life is the practice whereby a physician uses sedatives to reduce or take away a patient's consciousness until death. Although the incidence of CS is rising, as of yet little research has been conducted on how the administration of CS is experienced by medical practitioners. Existing research shows that many differences exist between medical practitioners regarding how and how often they perform CS. We conducted a focus group study to find out which factors may (...) facilitate or constrain the use of continuous sedation by physicians and nurses. The participants often had clear ideas on what could affect the likelihood that sedation would be used. The physicians and nurses in the focus groups testified that the use of continuous sedation was facilitated in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation. However, this ‘paradigm case’ was considered to occur only rarely. Furthermore, deviations from the paradigm case were said to be sometimes due to physicians initiating the discussion on CS too late or not initiating it at all for fear of inducing the patient. Deviations from the paradigm case may also occur when sedation proves to be too difficult for family members who are said to sometimes pressure the medical practitioners to increase dosages and speed up the sedation. (shrink)

Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying...

Three attempts are usually made to justify patents: natural rights, distributive justice, and consequentialist arguments, all of which I contest.The natural rights argument is traced back to John Locke, defender of the ‘labour theory of property,’ who essentially holds that persons have a right to property insofar as they have mixed their labour with it, and insofar as they have appropriated natural things without exhausting them or taking more than their share. Yet, the inventor’s mixing of labour is often the (...) last step of a longer historical process, and patents seem to encourage waste, since they restrict the use of an idea.The distributive justice argument holds that patents reward the initiative of inventors – with out this reward, ‘free riders’ would be able to compete unfairly; the exclusivity granted by patents corrects this hole in the free market. However, our current system does not necessarily reflect this principle; it is difficult to clarify the criteria on which an inventor deserves a reward; unsuccessful inventors and basic researchers also invest much initiative, and yet are not rewarded; it is unclear that justice should reward someone by granting them the exclusive right to determine what is done with knowledge; and no link exists between the social usefulness of an invention and the scope of protection granted by a patent.The consequentialist justification holds that patents encourage innovation, and the disclosure of knowledge. Although it is clear that patents encourage inventions, it is not clear that they encourage progress – they may even limit progress by restricting use of previous knowledge. As for the disclosure of knowledge: such knowledge is hard to keep secret in the first place, and patent offices grant overly broad patents.In conclusion, this paper offers some suggestions concerning the true costs of the patent system. (shrink)

The characterisation of anthropogenic climate change as a violation of basic human rights is gaining wide recognition. Many people believe that tackling this problem is exclusively the job of governments and supranational institutions (especially the United Nations Framework Convention on Climate Change). This argument can be traced back to the delegated authority model, according to which the legitimacy of political institutions depends on their ability to solve problems that are difficult to address at the individual level. Since the institutions created (...) to tackle climate change fail to do so, their legitimacy is under great pressure and can only be saved by considerations of feasibility. We argue that democratically elected representatives are able to claim that a more robust climate policy is unfeasible, but only because the mandate we as citizens grant them is very restrictive. Instead of shifting responsibility for the thoroughly inadequate response to climate change fully to political representatives, we should highlight the failure of the political community as a whole to fulfil its responsibility at the input-side of the delegation of authority. When individual voters fail to fulfil the minimal obligation to at least vote for parties that explicitly advocate robust climate policies, they cannot hide behind the delegated authority argument, but should accept their complicity in the massive violations of basic human rights caused by the failure to successfully tackle climate change. (shrink)

The preventative paradigm of preconception care is receiving increasing attention, yet its boundaries remain vague in three respects: temporally; agentially; and instrumentally. Crucially, it remains unclear just who is to be considered a ‘potential parent’, how soon they should take up preconception responsibilities, and how weighty their responsibilities should be.

In the context of debates on psychiatry issues pertaining to moral dimensions of psychiatric health care are frequently discussed. These debates invite reflection on the question whether forensic practitioners have a role in stimulating patients’ moral development and moral growth in the context of forensic psychiatric and psychological treatment and care. We conducted a qualitative study to examine to what extent forensic practitioners consider moral development and moral growth to be a part of their current professional practices and to what (...) extent they think that stimulating moral development is a legitimate objective in the context of forensic psychiatric treatment. In addition, we asked how forensic practitioners balance pubic safety and risk management concerns with the interests and wellbeing of the individual patient. We conclude that: elements of moral development and moral growth in forensic psychiatric care practices are to a certain extent inevitable and not necessarily questionable or undesirable; yet, as in similar debates these elements need to be made explicit in order to discuss the accompanying ethical challenges and boundaries. An open academic, professional and public debate on aspects of stimulating moral betterment within current practices is therefore desirable. (shrink)

Advancements in the field of biotechnology have accelerated the development of drugs that are manufactured from cultures of living cells, commonly referred to as “biologics.” Due to the complexity of the production process, generic biologics are unlikely to be chemically identical to the reference product, and accordingly are referred to as “biosimilars.”Encouraging the development of biosimilars has been presented as the key solution to decrease prices and increase access to biologics, but the development and use of biosimilars continues to raise (...) problems, none of which can easily be addressed. Developing a biosimilar requires considerable time and financial resources, and legitimate safety concerns necessitate elaborate clinical testing of biosimilars. As a consequence, the introduction of biosimilars onto the market has not resulted in significant price reductions, and concerns regarding the substitution and interchangeability of original biologics with biosimilars persist.This article will explain how the biologics production process distorts the trade-offs that traditionally guided both patent protection and regulatory exclusivities: disclosure as a key condition for benefiting from the corresponding monopoly position. Hence, we propose establishing a mechanism of mandatory deposit of the original biologic's cell line at the stage of the regulatory approval as the most effective remedy. (shrink)

Belgium is one of very few countries where euthanasia on the basis of psychiatric illness is legally possible. Three physicians involved in the euthanasia of a 38-year-old woman suffering from psychiatric illness recently faced a criminal trial for “murder by poisoning”, for allegedly having failed to comply with several requirements of the Belgian Euthanasia Law. Although none of the physicians were convicted, the case generated extensive debate, in the media and the general public as well as in the medical profession (...) and among policy makers. In this chapter, we take this trial as the starting point for a critical analysis of the clinical-psychiatric, ethical, and legal issues involved in evaluating euthanasia requests in cases of complex psychiatric disorders. In these cases, the requirements of the Belgian Euthanasia Law could be improved by mandating the advice of two psychiatrists, who are experts in the treatment of the specific condition of the person requesting euthanasia. Simultaneously with the process of evaluating the euthanasia request, there should be a parallel treatment track in which all therapeutic and recovery-oriented options are explored. These two tracks should not be in the hands of the same physician. (shrink)

Continuous sedation at the end of life is a practice that has attracted a great deal of attention. An increasing number of guidelines on the proposed correct performance of the practice have been drafted. All of the guidelines stress the importance of using sedation in proportion to the severity of the patient’s symptoms, thus to reduce the patient’s consciousness no more than is absolutely necessary. As different patients can have different experiences of suffering, the amount of suffering should, ideally, be (...) assessed subjectively; that is, via communication with the patient. Continuously sedated patients are often unable to communicate, however, making subjective methods of pain assessment unusable. For these patients, the degree of consciousness is the sole available measure. It therefore seems important to adequately measure how deeply the patient is sedated, thereby allowing sedation to be increased when it is too light and decreased when it is too heavy. This is in accordance with the idea that reducing consciousness is not an ethically neutral act.Although consciousness measuring techniques are a hot topic in anesthesiology, almost no research exists on the use of such techniques in the context of continuous sedation at the end of life. This article aims to review existing techniques to measure consciousness and to evaluate their applicability, efficiency, and invasiveness for patients who are continuously sedated until death.Techniques commonly used to assess the depth of sedation in continuously sedated patients are basic clinical assessment and sedation scales, as they are often considered reliable and noninvasive. These techniques might not be very reliable, however, since it is known that some patients are nonresponsive and yet aware. Moreover, sedation scales require stimulation of the patient (for example prodding, shaking, or providing painful stimuli), and can thus be considered invasive of one’s bodily integrity or dignity. Other techniques, such as EEG (electroencephalography) derivatives, may score better on reliability and invasiveness. Yet these have so far never been compared to sedation scale scores for patients receiving continuous sedation at the end of life.Therefore, we conclude that, for both clinical and ethical reasons, research into the efficiency and applicability of other techniques, such as derivatives of EEG, are urgently needed. (shrink)

This paper offers a few elements of an answer to the question to what extent drug patents can be morally justified. Justifications based on natural rights, distributive justice and utilitarian arguments are discussed and criticized. The author recognizes the potential of the patents to benefit society but argues that the system is currently evolving in the wrong direction, particularly in the field of drugs. More than a third of the world’s population has no access to essential drugs. The working of (...) the patent system is an important determinant of access to drugs. This paper argues that drug patents are not easily justified and that the ‘architecture’ of the patent system should be rethought in view of its mission of benefiting society. (shrink)

Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware (...) that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production. (shrink)

Although the UN and EU focus their climate policies on the prevention of a 2 8C global mean temperature rise, it has been estimated that a rise of at least 4 8C is more likely. Given the political climate of inaction, there is a need to instigate a bottom-up approach so as to build domestic support for future climate treaties, empower citizens, and motivate leaders to take action. A review is provided of the predominant top-down cap-and-trade policies in place – (...) the Kyoto Protocol and EU Emissions Trading Scheme (EU ETS) – with a focus on the grandfathering of emissions entitlements and the possibility of offsetting emissions. These policies are evaluated according to two criteria of justice and it is concluded that they fail to satisfy them. Some suggestions as to how the EU ETS can be improved so as to enable robust climate action are also offered. (shrink)

Attempts to justify the patent system can be based on three grounds: (1) natural rights; (2) distributive justice; and (3) utilitarian (economic) arguments. Each of these arguments is problematic in many ways. The first two are dealt with very briefly. The utilitarian argument is discussed more in depth.

The article ‘The active recruitment of health workers: a defence’ by Hidalgo1 discusses a highly interesting and relevant topic. It provides, in clear language, a mix of ethical arguments and empirical data, which are used to assess the validity of two arguments that are invoked by some who claim that the active recruitment of health workers from poor countries is morally impermissible. However, the article has two main shortcomings: the analysis is too narrow ; and various elements of the analysis (...) are problematic.The analysis is too narrowIf the question is whether promoting a ‘medical brain-drain’ from poor to rich countries is morally acceptable, then it is not only the actions of the persons soliciting relocation and those considering relocation that need to be considered. Within the status quo and mores of a free market society, these actors may very well be perceived as innocent—it may be the actions of others who maintain the status quo that may be at fault, if fault there is. Consider the question: is it acceptable to sell your slave to anyone, or only to someone who will be kind to her? This invites only the answers or . A potentially unacceptable starting point is presumed to be acceptable. The same problem arises, to some extent, with this article.The emigration of medical professionals clearly falls into two categories : where the country's investment in training the professional is adequately returned through payments by the emigrant to the state—that is, a state of affairs possibly more likely to exist with nurses and other carers who are not so costly to train; and …. (shrink)

On 19 December 2008 the Official Journal of Belgium published the ‘Law regarding the procurement and use of human body material destined for human medical applications or for scientific research purposes’. This paper will comment on various aspects of the Law: its scope of application (what is understood by ‘body material’?); its concept of ‘residual human body material’ (with far-reaching implications for the type of consent required for research); the nature of actions with and uses of human body material that (...) are explicitly prohibited; the right of donors to be informed of relevant information revealed by the use of their body material; and the special responsibilities placed on hospital ethics committees. As will be argued in this paper, several of these provisions are highly problematic from an ethical point of view, especially those relating to consent. Meanwhile, the Minister of Public Health has asked the Belgian Advisory Committee on Bioethics for advice on the incorporation of the ‘presumed consent’ model, that applies to post mortem organ donation, into the biobank Law’s provisions on post mortem removal and use of body material. This aspect of the Law effectively extends the ‘presumed consent’ regime, both from organs to body material in general, and from therapeutic uses to research uses. (shrink)

Data exclusivity is a temporary exclusive user right on the clinical data that need to be submitted to the regulatory authorities to prove that a new drug is safe and effective. For the pharmaceutical industry, data exclusivity is an important addition to the patent system, as data exclusivity will de facto delay the market entry of generic drugs until after the exclusive user rights on the clinical data have expired. In order to assess the normative legitimacy of the industry’s demand (...) to include minimum standards for data exclusivity in international agreements, this chapter evaluates the three justifications that have frequently been advanced, depicting data exclusivity as an essential policy tool to promote innovation, a mechanism to prevent the generic industry from ‘free-riding,’ and a legal instrument to protect the industry’s property rights in clinical data. (shrink)

With the case of Belgium as a negative example, this paper will evaluate the legitimacy of using mentally incompetents as organ sources. The first section examines the underlying moral dilemma that results from the necessity of balancing the principle of respect for persons with the obligation to help people in desperate need. We argue for the rejection of a radical utilitarian approach but also question the appropriateness of a categorical prohibition. Section two aims to strike a fair balance between the (...) competing interests at stake and to define the conditions under which organ harvest from mentally incompetents might be morally acceptable. To this end, we morally assess the main requirements that have been put forward to allow organ removal from incompetent donors. We conclude that the current Belgian legislation is far too permissive and that national regulations that do not permit the harvest of non-regenerable organs from mentally incompetents in exceptional circumstances are too restrictive. On the basis of this discussion, we propose a number of guiding principles for decision-making in this area. (shrink)

Volume 20, Issue 4, May 2020, Page 11-12.