Prominent thinkers such as Jurgen Habermas and Michael Sandel are warning that biomedical enhancements will undermine fundamental political values. Yet whether biomedical enhancements will undermine such values depends on how biomedical enhancements will function, how they will be administered and to whom. Since only few enhancements are obtainable, it is difficult to tell whether these predictions are sound. Nevertheless, such warnings are extremely valuable. As a society we must, at the very least, be aware of developments that could have harmful (...) consequences. Indeed, if important values were to be jeopardized, we should take appropriate measures to protect them. This paper focuses on four central values: solidarity, personal responsibility, equality and autonomy. It delineates the conditions under which biomedical enhancements would undermine these values. It also details the circumstances under which these values would be unaffected by enhancements as well as those under which they would be promoted. Specifying these conditions is valuable; it would enable society to prepare appropriate ethical guidelines and policy responses in advance. (shrink)

Biobanks for long-term research pose challenges to the legal and ethical validity of consent to participate. Different models of consent have been proposed to answer some of these challenges. This paper contributes to this discussion by considering the meaning and value of consent to participants in biobanks. Empirical data from a qualitative study is used to provide a participant view of the consent process and to demonstrate that, despite limited understanding of the research, consent provides the research participants with some (...) level of control and a form of self determination that they value. Participation is framed as a moral act of a responsible citizen providing reinforcement of self identity. Consent symbolizes the trust invested in researchers and research institutions to use the biobank for the public good. The paper argues that consent continues to play an important role in biobank participation and that a participant view should inform proposals to modify consent processes. (shrink)

I review the main models of disability and introduce a line of reasoning that has been neglected in the debate concerning disability and disadvantage. My reasoning suggests that while disablism can and should be combated, success will require more challenging transformations than those featured in the literature.

This paper focuses on medical ghostwriting in the United States. I argue that medical ghostwriting often involves plagiarism and, in those cases, can be treated as an act of research misconduct by both the federal government and research institutions. I also propose several anti-ghostwriting measures, including: 1) journals should implement guarantor policies so that researchers may be better held accountable for their work; 2) research institutions and the federal government should explicitly prohibit medical ghostwriting and outline appropriate penalties; and 3) (...) a publicly available database should be created to record researchers' ethics violations. (shrink)

Professional philosophers are members of bioethical committees and regulatory bodies in areas of interest to bioethicists. This suggests they possess moral expertise even if they do not exercise it directly and without constraint. Moral expertise is defined, and four arguments given in support of scepticism about their possession of such expertise are considered and rejected: the existence of extreme disagreement between moral philosophers about moral matters; the lack of a means clearly to identify moral experts; that expertise cannot be claimed (...) in that which lacks objectivity; and that ordinary people do not follow the advice of moral experts. I offer a better reason for scepticism grounded in the relation between moral philosophy and common-sense morality: namely that modern moral philosophy views even a developed moral theory as ultimately anchored in common-sense morality, that set of basic moral precepts which ordinary individuals have command of and use to regulate their own lives. Even if moral philosophers do nevertheless have a limited moral expertise, in that they alone can fully develop a set of moral judgments, I sketch reasons – grounded in the values of autonomy and of democracy – why moral philosophers should not wish non-philosophers to defer to their putative expertise. (shrink)

Following a discussion of some historical roots of conscience, we offer a systematized version of reflective equilibrium. Aiming at a comprehensive methodology for bioethical deliberation, we develop an expanded variant of reflective equilibrium, which we call 'triangular reflective equilibrium' and which incorporates insights from hermeneutics, critical theory and narrative ethics. We focus on a few distinctions, mainly between methods of justification in ethics and the social practice of bioethical deliberation, between coherence in ethical reasoning, personal integrity and consensus formation, and (...) between political and moral deliberation. The ideal of deliberation is explicated as a sharing of conscience within a special commitment to sincerity and openness to persuasion. Personal growth in wisdom is an indirect by-product of the continuous practice of moral deliberation. This is explicated in the light of Sternberg's balance theory of wisdom and in the context of medicine as a profession embodying altruistic responsibilities of care in democratic and pluralistic societies. (shrink)

Ethical challenges that arise within healthcare delivery institutions are currently categorized as either clinical or organizational, based on the type of issue. Despite this common binary issue-based methodology, empirical study and increasing academic dialogue indicate that a clear line cannot easily be drawn between organizational and clinical ethics. Disagreement around end-of-life treatments, for example, often spawn value differences amongst parties at both organizational and clinical levels and requires a resolution to address both the case at hand and large-scale underlying system-level (...) confounders. I refer to issues that contain elements of both clinical and organizational issues as hybrids and propose a new taxonomy to characterize hybrid cases. I contend that salient contextual features of an ethical issue, such as where it is identified, who it impacts and where it is ideally resolved in relation to its scope of impact, should inform procedure. Implementation of a Hybrid taxonomy viewing ethical issues as existing on a continuum furthers that end. The primary goals are to 1) systematize thinking about ethical issues that arise within healthcare delivery institutions and 2) allow the content of the ethical challenge to drive the process, rather than continuing to rely on the traditional binary issue-based choice. Failure to capture the complexity of hybrid situations perpetuates incomplete information and ultimately an inchoate resolution that creates more questions than answers. (shrink)

Antidepressant medication and evidence-based psychotherapy have largely equivalent efficacy in the management of the common, less severe grades of depression. As a result, several national guidelines recommend that either can be used in the treatment of this disorder. Psychotherapy, however, differs in that it assists insight into how the depressed person appraises and manages the stressors that frequently trigger depressive episodes. I argue that the self-knowledge achieved through psychotherapy has moral value in that it promotes the autonomy of stressor-related decisions. (...) I further argue that such an effect comprises a compelling moral reason for doctors to see evidence-based psychotherapy not as merely optional, but as a necessary treatment for their patients with depression. (shrink)

Background: Empirical studies in Muslim communities on organ donation and blood transfusion show that Muslim counsellors play an important role in the decision process. Despite the emerging importance of online English Sunni fatwas, these fatwas on organ donation and blood transfusion have hardly been studied, thus creating a gap in our knowledge of contemporary Islamic views on the subject. Method: We analysed 70 English Sunni e-fatwas and subjected them to an in-depth text analysis in order to reveal the key concepts (...) in the Islamic ethical framework regarding organ donation and blood transfusion. Results: All 70 fatwas allow for organ donation and blood transfusion. Autotransplantation is no problem at all if done for medical reasons. Allotransplantation, both from a living and a dead donor, appears to be possible though only in quite restricted ways. Xenotransplantation is less often mentioned but can be allowed in case of necessity. Transplantation in general is seen as an ongoing form of charity. Nearly half of the fatwas allowing blood transfusion do so without mentioning any restriction or problem whatsoever. The other half of the fatwas on transfusion contain the same conditional approval as found in the arguments pro organ transplantation. Conclusion: Our findings are very much in line with the international literature on the subject. We found two new elements: debates on the definition of the moment of death are hardly mentioned in the English Sunni fatwas and organ donation and blood transfusion are presented as an ongoing form of charity. (shrink)

It has been claimed in several places that the new genetic technologies allow humanity to achieve in a generation or two what might take natural selection hundreds of millennia in respect of the elimination of certain diseases and an increase in traits such as intelligence. More radically, it has been suggested that those same technologies could be used to instil characteristics that we might reasonably expect never to appear due to natural selection alone. John Harris, a proponent of this genomic (...) optimism, claims in his book Enhancing Evolution that we not only have it in our power to enhance evolution, but that we also have a duty to do so. In this paper, I claim that Harris' hand is strong but that he overplays it nevertheless. He is correct to dismiss the arguments of the anti-enhancement lobby and correct to say that enhancement is permissible; but 'good' is different from 'permissible' and his argument for the goodness of enhancement is less convincing. Moreover, he is simply wrong to claim that it generates a duty to enhance. (shrink)

In 2005, John Harris published a paper in the Journal of Medical Ethics in which he claimed that there was a duty to support scientific research. With Sarah Chan, he defended his claims against criticisms in this journal in 2008. In this paper I examine the defence, and claim that it is not powerful. Although he has established a slightly stronger position, it is not clear that the defence is sufficiently strong to show that there is a duty to support (...) scientific research. Important questions about fairness, about rescue, and about the relationship between reasons and obligations to act can still be raised; and these questions are important enough to destabilize the defence. (shrink)

Background: The rapid pace of progress in medical research, the consequent need for the timely transfer of new knowledge into practice, and the increasing need for ethics support, is making the work of Ethics Committees (ECs) ever more complex and demanding. As a response, ECs in many countries exhibit large variation in number, mandate, organization and member competences. This cross-sectional study aims to give an overview of the different types of activities of Italian ECs and favour discussion at a European (...) level. Methods: A questionnaire was emailed to all Italian Ethics Committees contained in the national Registry of the Ministry of Health, enquiring whether the EC was conducting, or planning to conduct, 4 specific activities. A telephone interview was conducted to determine reasons for failure to respond. Results: Response rate was 53% (101 respondents out of 191). 20% of ECs restrict their responsibilities to research protocol review, 25% also offer ethical consultation to institutions, support on individual health care decisions and promotes educational initiatives, while the remaining 50% conduct a few of the examined activities to varying degrees. Large variation was observed across different types of hosting institutions and geographical locations. Conclusions: A common European model should be developed, defining EC functions, member selection modalities, necessary member competences, decision-making criteria and measures for work verification. In the absence of sound empirical evidence, it would be interesting to study the effectiveness and efficiency of the different existing models. (shrink)

There has been much discussion regarding the acceptable use of sedation for palliation. A particularly contentious practice concerns deep, continuous sedation given to patients who are not imminently dying and given without provision of hydration or nutrition, with the end result that death is hastened. This has been called 'early terminal sedation'. Early terminal sedation is a practice composed of two legally and ethically accepted treatment options. Under certain conditions, patients have the right to reject hydration and nutrition, even if (...) these are life-sustaining. Patients are also entitled to sedation as palliation for intolerable, intractable suffering. Though early terminal sedation is thought to be rare at present, the changing nature of palliative medicine suggests its use will increase. Arguments regarding early terminal sedation have failed to recognize early terminal sedation as a distinct legal and ethical entity. It can be seen as both the simple sum of treatment refusal and sedation for palliation, analogous to terminal sedation. It can also be seen as an indivisible palliative treatment, more analogous to assisted suicide or euthanasia. But ultimately, it is wholly analogous neither to terminal sedation given when death is imminent, nor to assisted suicide or euthanasia. This paper contends that early terminal sedation should be considered as a distinct entity. Such a reconception promises to provide a way forward in the debate, practice and policy regarding this contentious area of palliative medicine. (shrink)

This article addresses the question of whether the arguments for a duty to die given by John Hardwig, the most prominent philosophical advocate of such a duty, are sound. Hardwig believes that the duty to die is relatively widespread among those with burdensome illnesses, dependencies, or medical conditions. I argue that although there are rare circumstances in which individuals have a duty to die, the situations Hardwig describes are not among these. After reconstructing Hardwig's argument for such a duty, highlighting (...) his central premise that ill, dependent, or aged individuals can impose unfair burdens upon others by continuing to live, I clarify precisely what Hardwig intends by his thesis that many of us have a duty to die. I then show that an important disanalogy exists between an uncontroversial example in which an individual has a duty to die and the situations in which Hardwig proposes individuals have a duty to die. More specifically, in situations where a duty to die exists, an individual's having a duty to die logically implies that those she burdens have a right to kill that individual in self-defense. I then suggest that the burdens that ill, dependent, or aged individuals impose on their families, loved ones, or caregivers do not constitute the kind of threat that warrants the latter killing the former in self-defense. Hence, the duty to die is much rarer than Hardwig supposes. (shrink)

Psychiatric research is advancing rapidly, with studies revealing new investigative tools and technologies that are aimed at improving the treatment and care of patients with psychiatric disorders. However, the ethical framework in which such research is conducted is not as well developed as we might expect. In this paper we argue that more thought needs to be given to the principles that underpin research in psychiatry and to the problems associated with putting those principles into practice. In particular, we comment (...) on some of the difficulties posed by the twin imperatives of ensuring that we respect the autonomy and interests of the research subject and, at the same time, enable potentially beneficial psychiatric research to flourish. We do not purport to offer a blueprint for the future; we do, however, seek to advance the debate by identifying some of the key questions to which better answers are required. (shrink)

In 'An Almost Absolute Value in History' John T. Noonan criticizes several attempts to provide a criterion for when an entity deserves rights. These criteria, he argues are either arbitrary or lead to absurd consequence. Noonan proposes human conception as the criterion of rights, and justifies it by appeal to the sharp shift in probability, at conception, of becoming a being possessed of human reason. Conception, then, is when abortion becomes immoral. The article has an historical and a philosophical goal. (...) The historical goal is to carefully present the probability argument in a charitable manner. The philosophical goal is to offer a unique criticism of Noonan's probability argument against abortion. I argue that, even on a very charitable reading of Noonan's argument for the conception criterion, this criterion is also susceptible to charges of arbitrariness and absurdity. Noonan's claim that probability shifts have anything to do with the moral rights of fetuses cannot be made coherent. I also show that there are problems with Noonan's assumptions about moral rights and the potential to become a being possessed of human reason. (shrink)

The concept of dignity is pervasive in bioethics. However, some bioethicists have argued that it is useless on three grounds: that it is indeterminate; that it is reactionary; and that it is redundant. In response, a number of defences of dignity have recently emerged. All of these defences claim that when dignity is suitably clarified, it can be of great use in helping us tackle bioethical controversies. This paper rejects such defences of dignity. It outlines the four most plausible conceptions (...) of dignity: dignity as virtuous behaviour; dignity as inherent moral worth; Kantian dignity; and dignity as species integrity. It argues that while each conception is coherent, each is also fundamentally flawed. As such, the paper argues for a bioethics without dignity: an 'undignified bioethics.'. (shrink)

We argue that the dead donor rule, which states that multiple vital organs should only be taken from dead patients, is justified neither in principle nor in practice. We use a thought experiment and a guiding assumption in the literature about the justification of moral principles to undermine the theoretical justification for the rule. We then offer two real world analogues to this thought experiment, voluntary active euthanasia and capital punishment, and argue that the moral permissibility of terminating any patient (...) through the removal of vital organs cannot turn on whether or not the practice violates the dead donor rule. Next, we consider practical justifications for the dead donor rule. Specifically, we consider whether there are compelling reasons to promulgate the rule even though its corresponding moral principle is not theoretically justified. We argue that there are no such reasons. In fact, we argue that promulgating the rule may actually decrease public trust in organ procurement procedures and medical institutions generally – even in states that do not permit capital punishment or voluntary active euthanasia. Finally, we examine our case against the dead donor rule in the light of common arguments for it. We find that these arguments are often misplaced – they do not support the dead donor rule. Instead, they support the quite different rule that patients should not be killed for their vital organs. (shrink)

According to the principle of patient autonomy, patients have the right to be self-determining in decisions about their own medical care, which includes the right to refuse treatment. However, a treatment refusal may legitimately be overridden in cases where the decision is judged to be incompetent. It has recently been proposed that in assessments of competence, attention should be paid to the evaluative judgments that guide patients' treatment decisions. In this paper I examine this claim in light of theories of (...) practical rationality, focusing on the difficult case of an anorexic person who is judged to be competent and refuses treatment, thereby putting themselves at risk of serious harm. I argue that the standard criteria for competence assess whether a treatment decision satisfies the goals of practical decision-making, and that this same criterion can be applied to a patient's decision-guiding commitments. As a consequence I propose that a particular understanding of practical rationality offers a theoretical framework for justifying involuntary treatment in the anorexia case. (shrink)

The contention that abortion harms women constitutes a new strategy employed by the pro-life movement to supplement arguments about fetal rights. David C. Reardon is a prominent promoter of this strategy. Post-abortion syndrome purports to establish that abortion psychologically harms women and, indeed, can harm persons associated with women who have abortions. Thus, harms that abortion is alleged to produce are multiplied. Claims of repression are employed to complicate efforts to disprove the existence of psychological harm and causal antecedents of (...) trauma are only selectively investigated. We argue that there is no such thing as post-abortion syndrome and that the psychological harms Reardon and others claim abortion inflicts on women can usually be ascribed to different causes. We question the evidence accumulated by Reardon and his analysis of data accumulated by others. Most importantly, we question whether the conclusions Reardon has drawn follow from the evidence he cites. (shrink)

Current developments in biomedicine are presenting us with difficult ethical decisions and raising complex policy questions about how to regulate these new developments. Particularly vexing for governments have been issues related to human embryo experimentation. Because some of the most promising biomedical developments, such as stem cell research and nuclear somatic transfer, involve such experimentation, several international bodies have drafted documents aimed to provide guidance to governments when developing biomedical science policy. Here I focus on two such documents: the Council (...) of Europe's Convention for the Protection of Human Rights and Dignity of the Human Being and the Additional Protocol to the Convention for the Protection of Human Rights and Dignity of the Human Being. I argue that by using human dignity as a criterion to determine the permissibility of particular human embryo research practices, these documents cannot aid in identifying research that would be contrary to human dignity. Thus, they fail to guide public policy on embryo experimentation. Their use of human dignity as a criterion makes their task of offering guidance unfeasible because the concept as used in these documents is too vague and is applied in contradictory ways. I discuss the main goals of these documents and their claims in relation to human embryo research. I then discuss how they have influenced public policy in several countries. Finally, I show that although these Council of Europe treaties attempt to serve as public policy guides in the area of embryo research, they fail to do so. (shrink)

In a Living Donor List Exchange program, the donor makes his kidney available for allocation to patients on the postmortal waiting-list and receives in exchange a postmortal kidney, usually an O-kidney, to be given to the recipient he favours. The program can be a solution for a candidate donor who is unable to donate directly or to participate in a paired kidney exchange because of blood group incompatibility or a positive cross-match. Each donation within an LDLE program makes an additional (...) organ available for transplantation. But because most of the pairs making use of the program will be A/O incompatible, it will also tend to increase the waiting time for patients with blood group O, who already have the longest waiting time. It has therefore been objected that the program is materially unjust, because it further disadvantages the least advantaged. This objection appeals to John Rawls' difference principle. However, the context for which Rawls proposed that difference principle, is significantly different from the present one. Applying the principle here amounts to a lop-sided trade-off between considerations of need and considerations of overall utility. Considerations of formal justice, however, may lead to a stronger objection to LDLE programs. Such a program means that one O-patient on the waiting list is exempted from the application of the general criteria used in constructing the list because he has a special bargaining advantage. This objection is spelled out and weighed against the obvious attraction of LDLE in a situation of (extreme) organ scarcity. (shrink)

Liberal theory seeks to achieve toleration, civil peace, and mutual respect in pluralistic societies by making public policy without reference to arguments arising from within formative ideals about what gives value to human life. Does it make sense to set aside such conceptions of the good when it comes to controversies about stem cell research and the genetic engineering of people or animals? Whether it is reasonable to bracket our worldviews in such cases depends on how we answer the moral (...) questions that the use of these biotechnologies presuppose. I argue that the moral language of liberal justice – of rights and duties, interests and opportunities, freedom and consent, equality and fairness – cannot speak to these underlying concerns about what the human embryo is, why the natural lottery matters to us, and whether 'animal nature' is worth preserving. I conclude that liberal theory is incapable of furnishing a coherent or desirable account to govern the way we use our emerging powers of biotechnology. (shrink)

Objectives: To investigate whether Chinese adolescents in Hong Kong share similar perceptions with their Western counterparts regarding their capacity for autonomous decision-making, and secondarily whether Chinese parents underestimate their adolescent children's desire and capacity for autonomous decision-making. Method: 'Healthy Adolescents' and their parents were recruited from four local secondary schools, and 'Sick Adolescents' and their parents from the pediatric wards and outpatient clinics. Their perceptions of adolescents' understanding of illnesses and treatments, maturity in judgment, risk-taking, openness to divergent opinions, pressure (...) from parents and doctors, submission to parental authority and preference for autonomy in medical decision-making are surveyed by a 50-item questionnaire on a five-point Likert scale. Results: Findings indicate that Chinese adolescents aged 14–16 perceive themselves to possess the necessary cognitive abilities and maturity in judgment to be autonomous decision-makers like their Western counterparts. Paradoxically, although they hesitate to assert their autonomy, they are also unwilling to surrender that autonomy to their parents even under coercion or intimidation. Parents tend to underestimate their adolescents' preferences for making autonomous decisions and overestimate the importance of parental authority in decision-making. Conclusion: '14-and-above' Chinese adolescents in Hong Kong perceive themselves as capable of autonomous decision-making in medically-related matters, but hesitate to assert their autonomy, probably because of the Confucian values of parental authority and filial piety that are deeply embedded in the local culture. (shrink)

Recently, Julian Savulescu and Guy Kahane have defended the Principle of Procreative Beneficence (PB), according to which prospective parents ought to select children with the view that their future child has 'the best chance of the best life'. I argue that the arguments Savulescu and Kahane adduce in favour of PB equally well support what I call the Principle of General Procreative Beneficence (GPB). GPB states that couples ought to select children in view of maximizing the overall expected value in (...) the world, not just the welfare of their future child. I further argue that Savulescu and Kahane's claim that PB has significantly more weight than competing moral principles, such as GPB, lacks justification. A possible argument for PB having significant weight builds on a principle of parental partiality towards one's own children. But this principle does not support PB; it supports a Principle of Sibling-Oriented Procreative Beneficence (SPB), according to which parents selecting a child should maximize the benefit of all their children. Indeed, PB itself will in some cases be self-effacing in favour of SPB. (shrink)

In this article, it is claimed that the protective provisions for adults with impaired decision-making capacity are misguided, insofar as they do not conclusively state whether research on this group should be permitted only as an exception, and as they arbitrarily allow for some groups to benefit from such research while others will not. Moreover, the presumed or former will of the subject is given insufficient weight, and the minimal risk standard does not make sense in this context. Because of (...) these problems, the present guidelines allow for the possibility of vulnerable people being exploited, something that is hidden behind a guise of solidarity. Instead we need to address the real issues at stake by rewriting the present statutes. It is suggested that new guidelines should be in some continuity with earlier efforts. However, in order to protect these subjects there is additional need for appointed representatives who monitor research and for legal obligations to compensate for any injuries suffered. Without these or similar measures we won't have an adequate system in place for the protection of non-benefiting persons who are unable to consent to research. (shrink)

This paper demonstrates that accounting for the moral harm of selecting for deafness is not as simple or obvious as the widespread negative response from the hearing community would suggest. The central questions addressed by the paper are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. The paper considers several different strategies for accounting for the supposed moral harm of selecting for deafness and concludes that the deaf (...) case cannot be treated in isolation. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision-making, including unassisted coital reproduction. The lesson to be learned from the deaf case is that we need norms that govern not just the use of reproductive technology, but procreation and procreative decision-making in all of its various forms. (shrink)

Where does the aspiration to retard human ageing fit in the 'big picture' of medical necessities and the requirements of just healthcare? Is there a duty to retard human ageing? And if so, how much should we invest in the basic science that studies the biology of ageing and could lead to interventions that modify the biological processes of human ageing? I consider two prominent accounts of equality and just healthcare – Norman Daniels's application of the principle of fair equality (...) of opportunity and Ronald Dworkin's account of equality of resources – and conclude that, once suitably amended and revised, both actually support the conclusion that anti-ageing research is important and could lead to interventions that ought to be considered 'medical necessities'. (shrink)

In this paper I examine the question of whether ethicists are moral experts. I call people moral experts if their moral judgments are correct with high probability and for the right reasons. I defend three theses, while developing a version of the coherence theory of moral justification based on the differences between moral and nonmoral experience: The answer to the question of whether there are moral experts depends on the answer to the question of how to justify moral judgments. Deductivism (...) and the coherence theory both provide some support for the opinion that moral experts exist in some way. I maintain – within the framework of a certain kind of coherence theory – that moral philosophers are 'semi-experts'. (shrink)

The four-principle approach to biomedical ethics is used worldwide by practitioners and researchers alike but it is rather unclear what exactly people do when they apply this approach. Ranking, specification, and balancing vary greatly among different people regarding a particular case. Thus, a sound and coherent applicability of principlism seems somewhat mysterious. What are principlists doing? The article examines the methodological strengths and weaknesses of the applicability of this approach. The most important result is that a sound and comprehensible application (...) of the four principles is additionally ensured by making use of the organizing meta-principle of common morality, which is the starting point and constraining framework of moral reasoning. (shrink)

This article is a response to McLeod and Baylis (2007) who speculate on the dangers of requesting fresh 'spare' embryos from IVF patients for human embryonic stem cell (hESC) research, particularly when those embryos are good enough to be transferred back to the woman. They argue that these embryos should be frozen instead. We explore what is meant by 'spare' embryos. We then provide empirical evidence, from a study of embryo donation and of embryo donors' views, to substantiate some of (...) their speculations about the problems associated with requesting fresh embryos. However, we also question whether such problems are resolved by embryo freezing, since further empirical evidence suggests that this raises other social and ethical problems for patients. There is little evidence that the request for embryos for research, in itself, causes patients distress. We suggest, however, that no requests for fresh embryos should be made in the first cycle of IVF treatment. Deferring the request to a later cycle ensures that potential donors are better informed (by experience and reflection) about the possible destinations of their embryos and about the definition of 'spare embryos'. Both this article, and that by McLeod and Baylis, emphasize the need to consider the views and experiences of embryo donors when evaluating the ethics of embryo donation for hESC research. (shrink)

Currently our assessment of whether someone is a good parent depends on the environmental inputs (or lack of such inputs) they give their children. But new genetic intervention technologies, to which we may soon have access, mean that how good a parent is will depend also on the genetic inputs they give their children. Each new piece of available technology threatens to open up another way that we can neglect our children. Our obligations to our children and our susceptibilities to (...) corresponding legal and moral sanctions may be about to explosively increase. In this paper I argue that we should treat conventional neglect and 'genetic neglect'– failing to use genetic intervention technologies to prevent serious diseases and disabilities – morally consistently. I conclude that in a range of cases parents will have a moral obligation to use genetic treatments to prevent serious disabilities in their children. My particular focus is on prenatal interventions and their impact of the bodily integrity of expectant mothers. I conclude that although bodily integrity constrains moral obligations, it is outweighed in a range of cases. (shrink)

This paper discusses the viability of a virtue-based approach to bioethics. Virtue ethics is clearly appropriate to addressing issues of professional character and conduct. But another major remit of bioethics is to evaluate the ethics of biomedical procedures in order to recommend regulatory policy. How appropriate is the virtue ethics approach to fulfilling this remit? The first part of this paper characterizes the methodology problem in bioethics in terms of diversity, and shows that virtue ethics does not simply restate this (...) problem in its own terms. However, fatal objections to the way the virtue ethics approach is typically taken in bioethics literature are presented in the second section of the paper. In the third part, a virtue-based approach to bioethics that avoids the shortcomings of the typical one is introduced and shown to be prima facie plausible. The upshot is an inviting new direction for research into bioethics' methodology. (shrink)

In From Chance to Choice , Allen Buchanan, Dan Brock, Norman Daniels and Daniel Wikler propose a new way of defending the moral significance of the distinction between genetic treatments and enhancements. They develop what they call a 'normal function model' of equality of opportunity and argue that it offers a 'limited' defence of this distinction. In this article, I critically assess their model and the support it (allegedly) provides for the treatment-enhancement distinction. First, I argue that there is a (...) troubling tension in the normal function model. Secondly, I argue that neither of the rationales invoked by Buchanan et al. really serves to justify this model or the results they seek to derive from it with respect to the significance of the distinction between treatments and enhancements. (shrink)

The concept of need is often proposed as providing an additional or alternative criterion to cost-effectiveness in making allocation decisions in health care. If it is to be of practical value it must be sufficiently precisely characterized to be useful to decision makers. This will require both an account of how degree of need for an intervention is to be determined and a prioritization rule that clarifies how degree of need and the cost of the intervention interact in determining the (...) relative priority of the intervention. Three common features of health care interventions must be accommodated in a comprehensive theory of need: the probabilistic nature of prognosis (with and without the intervention); the time course of effects; and the fact that the most effective treatments often combine more than one intervention. These common features are problematic for the concept of need. We outline various approaches to prioritization on the basis of need and argue that some approaches are more promising than others. (shrink)

Uncertainty as to how we should articulate empirical data and normative reasoning seems to underlie most difficulties regarding the 'empirical turn' in bioethics. This article examines three different ways in which we could understand 'empirical turn'. Using real facts in normative reasoning is trivial and would not represent a 'turn'. Becoming an empirical discipline through a shift to the social and neurosciences would be a turn away from normative thinking, which we should not take. Conducting empirical research to inform normative (...) reasoning is the usual meaning given to the term 'empirical turn'. In this sense, however, the turn is incomplete. Bioethics has imported methodological tools from empirical disciplines, but too often it has not imported the standards to which researchers in these disciplines are held. Integrating empirical and normative approaches also represents true added difficulties. Addressing these issues from the standpoint of debates on the fact-value distinction can cloud very real methodological concerns by displacing the debate to a level of abstraction where they need not be apparent. Ideally, empirical research in bioethics should meet standards for empirical and normative validity similar to those used in the source disciplines for these methods, and articulate these aspects clearly and appropriately. More modestly, criteria to ensure that none of these standards are completely left aside would improve the quality of empirical bioethics research and partly clear the air of critiques addressing its theoretical justification, when its rigour in the particularly difficult context of interdisciplinarity is what should be at stake. (shrink)

Incompetent patients need to have someone else make decisions on their behalf. According to the Substituted Judgment Standard the surrogate decision maker ought to make the decision that the patient would have made, had he or she been competent. Objections have been raised against this traditional construal of the standard on the grounds that it involves flawed counterfactual reasoning, and amendments have been suggested within the framework of possible worlds semantics. The paper shows that while this approach may circumvent the (...) alleged problem, the way it has so far been elaborated reflects insufficient understanding of the moral underpinnings of the idea of substituted judgment. Proper recognition of these moral underpinnings has potentially far-reaching implications for our normative assumptions about accuracy and objectivity in surrogate decision making. (shrink)

Diagnostic self-testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point-of-care facilities and at home. Designed to allow earlier detection of diseases, self-testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve (...) health and reduce health costs. However, the full implications of future home-based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home-based self-testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home-based self-testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

Most life science research entails dual-use complexity and may be misused for harmful purposes, e.g. biological weapons. The Precautionary Principle applies to special problems characterized by complexity in the relationship between human activities and their consequences. This article examines whether the principle, so far mainly used in environmental and public health issues, is applicable and suitable to the field of dual-use life science research. Four central elements of the principle are examined: threat, uncertainty, prescription and action. Although charges against the (...) principle exist – for example that it stifles scientific development, lacks practical applicability and is poorly defined and vague – the analysis concludes that a Precautionary Principle is applicable to the field. Certain factors such as credibility of the threat, availability of information, clear prescriptive demands on responsibility and directives on how to act, determine the suitability and success of a Precautionary Principle. Moreover, policy-makers and researchers share a responsibility for providing and seeking information about potential sources of harm. A central conclusion is that the principle is meaningful and useful if applied as a context-dependent moral principle and allowed flexibility in its practical use. The principle may then inspire awareness-raising and the establishment of practical routines which appropriately reflect the fact that life science research may be misused for harmful purposes. (shrink)

Darker skin correlates with reduced opportunities and negative health outcomes. Recent discoveries related to the genes associated with skin tone, and the historical use of cosmetics to conform to racist appearance standards, suggest effective skin-lightening products may soon become available. This article examines whether medical interventions of this sort should be permitted, subsidized, or restricted, using Norman Daniels's framework for determining what justice requires in terms of protecting health. I argue that Daniels's expansive view of the requirements of justice in (...) meeting health needs offers some support for recognizing a societal obligation to provide this kind of 'enhancement,' in light of the strong connections between skin tone and health outcomes. On balance, however, Daniels's framework offers compelling reasons to reject insurance coverage for skin-lightening medical interventions, including the likely ineffectiveness of such technologies in mitigating racial health disparities, and the danger that covering skin-lightening enhancements would undermine public support for cooperative schemes that protect health. In fact, justice may require limiting access to these technologies because of their potential to exacerbate the negative effects of racism. (shrink)

This paper considers two arguments that are common in the literature on organ sales. First, organ sales are exploitative and therefore should not be permitted. Second, it doesn't matter whether organ sales are exploitative or not; the only thing that matters is that we do what is in the interests of those who need to be protected. In this paper, I argue that both of these arguments are too simplistic. My intention, however, is not to argue for or against organ (...) sales. My conclusion, rather, is simply that we cannot hope to address the issue of organ sales if we lack a good understanding of exploitation. We should not attempt to answer the question of whether or not organ sales should be banned on the grounds that they are exploitative without acknowledging and addressing the nuances involved in understanding exploitation. (shrink)

It may soon be possible to develop pills that allow parents to induce in themselves more loving behaviour, attitudes and emotions towards their children. In this paper, I consider whether pharmacologically induced parental love can satisfy reasonable conditions of authenticity; why anyone would be interested in taking such parental love pills at all, and whether inducing parental love pharmacologically promotes narcissism or results in self-instrumentalization. I also examine how the availability of such pills may affect the duty to love a (...) child. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This 'empirical turn' is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences (...) of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached. (shrink)

Twelve years ago the British media got wind of a London gynecologist who performed an elective reduction on a twin pregnancy reducing it to a singleton. Perhaps not surprisingly, opinion on the moral status of twin reductions was divided. But in the last few years new evidence regarding the medical risks of twin pregnancies has emerged, suggesting that twin reductions are relevantly similar to the reductions performed on high-end multi-fetal pregnancies. This evidence has appeared to resolve the moral debate. In (...) this paper I look at the role of clinical evidence in medical ethics. In particular I examine the role of clinical evidence in determining what counts as a significant harm or risk. First, I challenge the extent to which these empirical claims are descriptive, suggesting instead that the evidence is to some degree normative in character. Second, I question whether such empirical claims should count as evidence for what are essentially difficult ethical decisions – a role they appear to play in the case of elective reductions. I will argue that they should not, primarily because the value-laden nature of this evidence conceals much of what is ethically at stake. It is important to recognize that empirical evidence cannot be a substitute for ethical deliberation. (shrink)

Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life-sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life-sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient's death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices (...) is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life-sustaining treatment in order to bring accepted end-of-life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end-of-life decisions is radically mistaken. (shrink)

Many recent articles argue that participants who seroconvert during HIV prevention trials deserve treatment when they develop AIDS, and there is a general consensus that the participants in HIV/AIDS treatment trials should have continuing post-trial access. As a result, the primary concern of many ethicists and activists has shifted from justifying an obligation to treat trial participants, to working out mechanisms through which treatment could be provided. In this paper I argue that this shift frequently conceals an important assumption: that (...) if there is an obligation to supply treatment, then any party who could provide it may be prevailed upon to discharge the obligation. This assumption is false. The reasons why trial participants should get ART affect who has the duty to provide it. We should not burden governments with the obligations of sponsors, nor researchers with the obligations of the international community. And we should not deprive a group of treatment because their need is less salient than that of research participants. Insisting otherwise may lead to people being wrongfully deprived of access to antiretrovirals. (shrink)

Over the past few years, several proposals aimed at procuring human pluripotent (embryonic-like) stem cells without involving the destruction of a human embryo have been proposed and widely discussed. This article focuses on a basic aspect of the debate, namely the plausibility of one or more of these new proposals being able to meet the ethical requirements that those who regard the human embryo as sacred have tried to impose on stem cells research in the last ten years. The thesis (...) of the article is that focusing the discussion only on the sources of stem cells has prevented a full understanding of the foundation, meaning and scope of these ethical requirements. To substantiate this thesis, the article takes into consideration two issues: the first has to do with the potential of the cells obtained through some of the new approaches (iPS included), the second (and decisive) with the argument of the 'indirect complicity', applied to the use of 'contaminated' knowledge. (shrink)

The advances in biotechnology have given rise to a discussion concerning the strong emotional reaction expressed by the public towards biotechnological innovations. This reaction has been named the 'Yuck-factor' by several theorists of bioethics. Leon Kass, the former chairman of the President's council on bioethics, has appraised this public reaction as 'an emotional expression of deep wisdom, beyond reason's power fully to articulate it'. 1 Similar arguments have been forwarded by the Catholic Church, several Protestant denominations and the Pro-Life movement. (...) Several bioethicists have, however, opposed the idea of a disgust-based morality. 2 Recent findings in cognitive science support the view that the strong negative emotions people often experience when faced with biotechnological ideas are not expressions of inner wisdom. The negative emotions may rather be the result of a cognitive violation the biotechnological innovations easily cause. Due to their evolutionary background, people have certain automatic and quick cognitive tendencies routinely used for categorizing and reasoning about nature, usually termed 'folk biology'. Biotechnological processes like hybridisation and cloning clearly violate several of the cognitive rules people naturally apply for the explanation and categorization of their natural environment. As the cognitive tendencies routinely applied to the explanation of biological world are violated, an emotional response of fear, disgust and of something unnatural being underway is easily provoked. It is suggested in this paper that the reason behind the Yuck-factor is not a deep inner wisdom, but a violation of natural human cognitive tendencies concerning the biological world. (shrink)

The authors describe the arrival and treatment of 164 severe chronic psychiatric patients who were displaced from the Serbian army-controlled Jakes psychiatric hospital and off-loaded on the afternoon of 28th of May, 1992 at the gates of the Psychiatry Clinic in Tuzla. Through analysis of their incomplete medical records, which arrived with the patients in Tuzla, and analysis of their activities during and after the war, they found that 83 of the patients (50%) were males and 147 (89.6%) were admitted (...) to the Psychiatry Clinic in Tuzla. Of the patients, 86 (58.5%) were found to be Serbs. The majority of them were incapable of independent living and required ongoing medical and social care. They were from all regions of Bosnia-Herzegovina, 81.6% had schizophrenia and 70 (47.6%) were over 50 years of age. For its humanitarian work, its contribution to peace and for the maintenance of the multi-ethnic Bosnia-Herzegovina, the Psychiatry Clinic in Tuzla received the Golden Award for Peace from the International Legion of Humanists in May 1998. (shrink)

Background: Biomedical science is producing an avalanche of data about risk factors, often with a small predictive value, associated with a broad diversity of diseases. Prevention and screening are increasingly moving from public health into the clinic. Therefore, the question of which risk factors to investigate and disclose in the individual patient, becomes ethically increasingly urgent. In line with Wilson and Jungner's public health-related 10 principles for screening, it seems crucial to distinguish important from unimportant health risks. Aim: to explore (...) the ways in which clinicians distinguish important from unimportant health risks. Methods: We interviewed 36 respondents (gastroenterologists and gynaecologists/obstetrics) in 5 focus group interviews and 15 open in-depth interviews on their interpretation of what makes a health risk important. Results: Physicians primarily interpreted importance as the severity of the possible harm, less often its probability. Possibilities of prevention or reassurance strongly influenced their judgment on importance. Discussion: It is not likely that interpreting 'important' as 'severe' will help in differentiating meaningful from meaningless risk knowledge. A more fundamental change in our ways of dealing with risk may be called for. We discuss existing literature on resilience as an alternative way to deal with risk. Balancing prevention and risk reduction with resilience could be a fruitful direction. (shrink)

This study assessed the knowledge and perception of human biological materials (HBM) and biorepositories among three study groups in South Korea. The relationship between the knowledge and the perception among different groups was also examined by using factor and regression analyses. In a self-reporting survey of 440 respondents, the expert group was found more likely to be knowledgeable and positively perceived than the others. Four factors emerged: Sale and Consent, Flexible Use, Self-Confidence, and Korean Bioethics and Biosafety Action restriction perception. (...) The results indicate that those who are well aware of the existence of biobanks were more positively inclined to receive the Sale and Consent perception. As a result of the need for high quality HBMs and the use of appropriate sampling procedures for every aspect of the collection and use process, the biorepository community should pay attention to ethical, legal, and policy issues. (shrink)

Offering cash payments to research subjects is a common recruiting method but there is significant debate about whether and in what amount such payments are appropriate. This paper is concerned with exploitation and whether there should be a lower limit on the amount researchers can pay their subjects. When subjects participate in research as a way to make money, fairness requires that researchers pay them a fair wage. This call for the establishment of a lower limit meets resistance in two (...) places: (1) denial that the payments offered by researchers are wages for participation; and (2) concern about undue inducement. This paper critically examines these arguments for and against a lower limit. It shows that the need for a lower limit cannot be avoided by adopting a non-wage payment model and that concerns about undue inducement are unjustified in all trials except those that present greater than minimal risk. This analysis suggests the following compromise position: there should be an unconditional lower limit on payment amounts so that researchers cannot offer less than a fair wage, and when researchers cannot satisfy this limit because fairness requires a problematically large payment, then researchers should offer no payment at all. (shrink)

In this paper I examine the debate between 'protectionists' and 'liberationists' concerning the appropriate role of minors in decision-making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision-making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of (...) expanded participation by minors in treatment decisions, and decision-making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns. (shrink)

Predictive genetic testing may confront those affected with difficult life situations that they have not experienced before. These life situations may be interpreted as 'absurd'. In this paper we present a case study of a predictive test situation, showing the perspective of a woman going through the process of deciding for or against taking the test, and struggling with feelings of alienation. To interpret her experiences, we refer to the concept of absurdity, developed by the French Philosopher Albert Camus. Camus' (...) writings on absurdity appear to resonate with patients' stories when they talk about their body and experiences of illness. In this paper we draw on Camus' philosophical essay 'The Myth of Sisyphus' (1942), and compare the absurd experiences of Sisyphus with the interviewee's story. This comparison opens up a field of ethical reflection. We demonstrate that Camus' concept of absurdity offers a new and promising approach to understanding the fragility of patients' situations, especially in the field of predictive testing. We show that people affected might find new meaning through narratives that help them to reconstruct the absurd without totally overcoming it. In conclusion, we will draw out some normative consequences of our narrative approach. (shrink)

How should we conceive of a right to reproduce? And, morally speaking, what might be said to justify such a right? These are just two questions of interest that are raised by the technologies of assisted reproduction. This paper analyses the possible legitimate grounds for a right to reproduce within the two main theories of rights; interest theory and choice theory.

In research ethics there is a canon regarding what ethical rules ought to be followed by investigators vis-à-vis their treatment of subjects and a canon regarding what fundamental ethical principles apply to the endeavor. What I aim to demonstrate here is that several of the rules find no support in the principles. This leaves anyone who would insist that we not abandon those rules in the difficult position of needing to establish that we are nevertheless justified in believing in the (...) validity of the rules. I conclude by arguing that this is not likely to be accomplished. The rules I call into question are the rules requiring: – that studies be designed in a scientifically valid way – that risks to subjects be minimized – that subjects be afforded post-trial access to experimental interventions – that inducements paid to subjects not be counted as a benefit to them – that inducements paid to subjects not be 'undue' – that subjects must remain free to withdraw from the study at any time for any reason without penalty Both canons, the canon on principles and the canon on rules, are found in the overlap among ethical pronouncements that are themselves canonical: the Nuremberg Code, the Declaration of Helsinki, the Belmont Report, CIOMS's International Ethical Guidelines for Biomedical Research Involving Human Subjects, and NBAC's 2001 report, Ethical Issues in International Research: Clinical Trials in Developing Countries. (shrink)

In 'Parental Virtues: A New Way of Thinking about the Morality of Reproductive Actions' Rosalind McDougall proposes a virtue-based framework to assess the morality of child selection. Applying the virtue-based account to the selection of children with impairments does not lead, according to McDougall, to an unequivocal answer to the morality of selecting impaired children. In 'Impairment, Flourishing, and the Moral Nature of Parenthood,' she also applies the virtue-based account to the discussion of child selection, and claims that couples with (...) an impairment are morally justified in selecting a child with the same impairment. This claim, she maintains, reveals that the flourishing of a child should be understood as requiring environment-specific characteristics. I argue that McDougall's argument begs the question. More importantly, it does not do justice to virtue ethics. I also question to what extent a virtue ethics framework can be successfully applied to discussions about the moral permissibility of reproductive actions. (shrink)

How should UNOS deal with the presence of scientific controversies on the risk factors for organ rejection when designing its allocation policies? The answer I defend in this paper is that the more undesirable the consequences of making a mistake in accepting a scientific hypothesis, the higher the degree of confirmation required for its acceptance. I argue that the application of this principle should lead to the rejection of the hypothesis that 'less than perfect' Human Leucocyte Antigen (HLA) matches are (...) an important determinant of kidney graft survival. The scientific community has been divided all along on the significance of partial antigen matches. Yet reliance on partial matches has emerged as one of the primary factors leading blacks to spend a much longer time than whites on the waiting list for kidneys, thereby potentially impacting the justice of the kidney allocation policy. My case study illustrates one of the legitimate roles non-epistemic values can play in science and calls into question the ideal of a value-free science. (shrink)

As of 2008, surrogacy is legal and openly practised in various places; Japan, however, has no regulations or laws regarding surrogacy. This paper reports the situation of surrogacy in Japan and in five other regions (the USA, the UK, Taiwan, Korea and France) to clarify the pros and cons of prohibiting surrogacy, along with the problems and issues relating to surrogacy compensation. Not only in a country such as France that completely prohibits surrogacy within the country, but also in a (...) country such as the UK that allows non-commercial surrogacy, infertile couples travel overseas for the purpose of surrogacy. In addition, some couples might seek underground surrogacy if the government prohibits surrogacy. If an intended parent couple and a surrogate make an agreement among themselves and then a problem occurs, they cannot ask for support from professionals or bring a case to court, as can be observed in South Korea and Taiwan. We also conclude that there is little difference between commercial surrogacy and non-commercial surrogacy in the absence of a clear definition of 'reasonable expenses.' In the UK, the law does not allow surrogates to receive compensation. However, in reality, there may be little difference between the amounts paid to surrogates for profit in the US and those paid to surrogates for reasonable expenses in the UK. We conclude that the issue of surrogacy demands further discussion in Japan. (shrink)

It has long been thought that certain key bioethical views depend heavily on work in personal identity theory, regarding questions of either our essence or the conditions of our numerical identity across time. In this paper I argue to the contrary, that personal identity is actually not significant at all in this arena. Specifically, I explore three topics where considerations of identity are thought to be essential – abortion, definition of death, and advance directives – and I show in each (...) case that the significant work is being done by a relation other than identity. (shrink)

It is by now no secret that some scientific articles are ghost authored – that is, written by someone other than the person whose name appears at the top of the article. Ghost authorship, however, is only one sort of ghosting. In this article, we present evidence that pharmaceutical companies engage in the ghost management of the scientific literature, by controlling or shaping several crucial steps in the research, writing, and publication of scientific articles. Ghost management allows the pharmaceutical industry (...) to shape the literature in ways that serve its interests. This article aims to reinforce and expand publication ethics as an important area of concern for bioethics. Since ghost-managed research is primarily undertaken in the interests of marketing, large quantities of medical research violate not just publication norms but also research ethics. Much of this research involves human subjects, and yet is performed not primarily to increase knowledge for broad human benefit, but to disseminate results in the service of profits. Those who sponsor, manage, conduct, and publish such research therefore behave unethically, since they put patients at risk without justification. This leads us to a strong conclusion: if medical journals want to ensure that the research they publish is ethically sound, they should not publish articles that are commercially sponsored. (shrink)

Can it be wrong to conduct medical research on human subjects even with their informed consent and even when the transaction between the subjects and researchers is expected to be mutually beneficial? This question is especially pressing today in light of the rise of a semi-professional class of 'guinea pigs'– human research subjects that sell researchers a right of access to their bodies in exchange for money. Can these exchanges be morally problematic even when they are consensual and mutually beneficial? (...) I argue that there are two general kinds of concern one can have about such transactions – concerns about the nature of what is sold and concerns about the conditions in which the selling occurs. The former involves worries about degradation and the possible wrongness of selling a right of access to one's body. These worries, I argue, are not very serious. The latter involves worries about coercion, exploitation, and undue influence – about how, by virtue of their ignorance, impulsiveness, or desperation, guinea pigs can be taken advantage of by medical researchers. These worries are quite serious but I argue that, at least in cases where the exchange between guinea pigs and researchers is consensual and mutually beneficial, they do not raise insurmountable moral problems. (shrink)

In this article, I consider whether the advance directive of a person in minimally conscious state ought to be adhered to when its prescriptions conflict with her current wishes. I argue that an advance directive can have moral significance after its issuer has succumbed to minimally conscious state. I also defend the view that the patient can still have a significant degree of autonomy. Consequently, I conclude that her advance directive ought not to be applied. Then I briefly assess whether (...) considerations pertaining to respecting the patient's autonomy could still require obedience to the desire expressed in her advance directive and arrive at a negative answer. (shrink)

One of the requirements in the Dutch regulation for euthanasia and assisted suicide is that the doctor must be satisfied 'that the patient's suffering is unbearable, and that there is no prospect of improvement.' In the notorious Chabot case, a psychiatrist assisted a 50 year old woman in suicide, although she did not suffer from any somatic disease, nor strictly speaking from any psychiatric condition. In Seduced by Death, Herbert Hendin concluded that apparently the Dutch regulation now allows physicians to (...) assist anyone in suicide simply because he or she is unhappy. In this paper, I reject Hendin's conclusion and in particular his description of Mrs Boomsma as someone who was 'simply unhappy.' After a detailed narration of her lifestory, I turn to the American philosopher Harry Frankfurt's account of volitional incapacity and love for a more accurate characterization of her suffering. Having been through what she had, she could only go on living as another person than the one she had been when she was a happy mother. That would have violated her integrity, and that she could not bring herself to do. (shrink)

An obstacle to abortion exists in the form of abortion 'counselling' that discourages women from terminating their pregnancies. This counselling involves providing information about the procedure that tends to create feelings of guilt, anxiety and strong emotional reactions to the recognizable form of a human fetus. Instances of such counselling that involve false or misleading information are clearly unethical and do not prompt much philosophical reflection, but the prospect of truthful abortion counselling draws attention to a delicate issue for healthcare (...) professionals seeking to respect patient autonomy. This is the fact that even accurate information about abortion procedures can have intimidating effects on women seeking to terminate a pregnancy. Consequently, a dilemma arises regarding the information that one ought to provide to patients considering an abortion: on the one hand, the mere offering of certain types of information can lead to intimidation; on the other hand, withholding information that some patients would consider relevant to their decision-making is objectionably paternalistic on any standard account of the physician-patient relationship. This is an unsettling conclusion for the possibility of setting fixed professional guidelines regarding the counselling offered to women who are considering abortion. Thus, abortion ought to be viewed as an illuminating example of a procedure for which the process of securing informed consent ought to be highly context-sensitive and responsive to the needs of each individual patient. This result underscores the need for health care professionals to cultivate trusting relationships with patients and to develop finely tuned powers of practical judgment. (shrink)