The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It (...) is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent. (shrink)

Although recent scholarship in diverse professional areas shows an ongoing interest in the application of agape - the New Testament's term for the highest order of self-giving love - no published work has made an in-depth exploration of agape in relation to journalism. This article explores what agape can contribute to media theory and practice. After explaining what distinguishes agape from other concepts of altruism and how agape can complement other approaches to compassion or minimizing harm, the analysis turns to (...) three questions raised by applying agape to mainstream journalism: (a) Does agape have a place for self-interest? (b) What does agape imply for notions of journalistic neutrality? (c) Can agape speak to journalists who don't accept its religious roots? Agape provides a test case for the application of religiously based ethical perspectives to journalism. (shrink)

The concept of minimal risk has been used to regulate and limit participation by adolescents in clinical trials. It can be understood as setting an absolute standard of what risks are considered minimal or it can be interpreted as relative to the actual risks faced by members of the host community for the trial. While commentators have almost universally opposed a relative interpretation of the environmental risks faced by potential adolescent trial participants, we argue that the ethical concerns against the (...) relative standard may not be as convincing as these commentators believe. Our aim is to present the case for a relative standard of environmental risk in order to open a debate on this subject. We conclude by discussing how a relative standard of environmental risk could be defended in the specific case of an HIV vaccine trial among adolescents in South Africa. (shrink)

Why do we persist in the relentless pursuit of artificial nourishment and other treatments to maintain a permanently unconscious existence? In facing the future, if not the present world-wide reality of a huge number of persistent vegetative state (PVS) patients, will they be treated because of our ethical commitment to their humanity, or because of an ethical paralysis in the face of biotechnical progress? The PVS patient is cut off from the normal patterns of human connection and communication, with a (...) life unlike other forms of human existence. Why the struggle to justify ending a life which, it is said, has suffered an irreversible loss of the content of consciousness? Elsewhere, the authors have addressed the ethical controversies and confusion engendered by ambiguous terminology, misuse of medical facts and the differing interpretations of what constitutes 'effective' treatment: in particular, the issue of whether in fact artificial nutrition and hydration is a medical treatment, or simply part of the obligatory care owed to all patients, permanently unconscious or not. In this paper, we intend to argue that recent analyses of medical futility, its meaning and ethical implications, despite an absence of public consensus, permit some tentative re-evaluation of our ethical obligations to the PVS patient. (shrink)

Respect for Autonomy has been a mainstay of medical ethics since its enshrinement as one of the four principles of biomedical ethics by Beauchamp and Childress’ in the late 1970s. This paper traces the development of this modern concept from Antiquity to the present day, paying attention to its Enlightenment origins in Kant and Rousseau. The rapid C20th developments of bioethics and RFA are then considered in the context of the post-war period and American socio-political thought. The validity and utility (...) of the RFA are discussed in light of this philosophical-historical account. It is concluded that it is not necessary to embrace an ethic of autonomy in order to guard patients from coercion or paternalism, and that, on the contrary, the dominance of autonomy threatens to undermine those very things which have helped doctors come to view and respect their patients as persons. (shrink)

What is Christian about Christian bioethics? The short answer to this question is that the Incarnation should shape the form and content of Christian bioethics. In explicating this answer it is argued that contemporary medicine is unwittingly embracing and implementing the transhumanist dream of transforming humans into posthumans. Contemporary medicine does not admit that there are any limits in principle to the extent to which it should intervene to improve the quality of human life. This largely inarticulate, yet ambitious, agenda (...) is derived first in late modernity's failed, but nonetheless ongoing, attempt to transform necessity into goodness, and second the loss of any viable concept of eternity, thereby stripping temporal existence of any normative significance. In short, medicine has become the vanguard of a profane attempt to save humankind by extracting data from flesh. In response, it is contended that an alternative Christian bioethics must be shaped by the Incarnation, the Word made flesh. This assertion does not entitle Christians to oppose the posthuman trajectory of contemporary medicine on the basis of any natural or biological essentialism. Rather, it is an evangelical witness to the grace of Christ's redemption instead of the work of self-transformation. It is Christ alone who thereby makes the vulnerability and mortality of finitude a gift and blessing. Specifically, it is maintained that the chasm separating necessity and goodness cannot be filled but only bridged through the suffering entailed in Christ's cross, and through Christ's resurrection eternity becomes the standard against which the temporal lives of human creatures are properly formed and measured. Consequently, Christian bioethics should help us become conformed to Christ rather than enabling selftransformation. (shrink)

In 1969, the field of human genetics was in its infancy. Amniocentesis was a new technique for prenatal diagnosis, and a newborn genetic screening program had been established in one state. There were also concerns about the potential hazards of genetic engineering. A research group at the Hastings Center and Paul Ramsey pioneered in the discussion of genetics and bioethics. Two principal techniques have emerged as being of enduring importance: human gene transfer research and genetic testing and screening. This essay (...) tracks the development and use of these techniques and considers the ethical issues that they raise. (shrink)

Has not the time fully come to lift the prohibition on a regulated market in organs for transplantation? Is there a price for such a market that would be too high to pay? The author revisits the cases for and against organ markets in the light of cultural shifts in society and asks whether the traditional insistence on altruism represents a hindrance to much needed developments or a safeguard for much valued public goods.

In her paper ‘Cosmetic surgery and conscientious objection’, Minerva rightly identifies cosmetic surgery as an interesting test case for the question of conscientious objection in medicine. Her treatment of this important subject, however, seems problematic. It is argued that Minerva's suggestion that a doctor has a prima facie duty to satisfy patient preferences even against his better clinical judgment, which we call Patient Preference Absolutism, must be regarded with scepticism. This is because it overlooks an important distinction regarding autonomy's meaning (...) and place in clinical practice, and it makes obsolete the important concepts of expert clinical judgment and beneficence. Finally, we discuss two ideas which emerge from consideration of cosmetic surgery in relation to conscientious objection. These are the possible analogy between clinical judgment and conscientious objection, and the possible role the goals of medicine can play in defining the scope of conscientious objection. (shrink)

In August 2001, the Maryland Court of Appeals harshly criticized the Kennedy Krieger Institute of Johns Hopkins University for knowingly exposing poor children to lead-based paint. The court’s decision made national news, and is worth examining because it raises several very important issues for research ethics.The research conducted by the Institute was an attempt to understand how successful different lead abatement programs were in reducing continued lead exposure to children. Previously, Julian Chisolm and Mark Farfel, of John Hopkins University, had (...) disclosed the dangers of traditional dust-generating deleading practices. In the current study, Dr. Farfel and colleagues sought to document the longevity of various lead-based paint abatement strategies. (shrink)

A project featuring scholars in nursing ethics was planned in 2005. The goal was to document the contributions of some 24 selected American nurse ethicists to bioethics, and to discuss and explore the future trajectory of that work through a two-day working seminar. This article outlines the beginnings of bioethics in the USA and the specific contribution of nurse scholars to the debate, the preparation for the seminar, the results of the project, and the possible application of such a model (...) for teaching and archiving in the future. Documentation of the work carried out at the seminar resulted in the publication of a book. Short biographies of the participants at the seminar are included in Appendix 1. (shrink)

The main aim of this paper is to investigate the views of healthcare professionals in Portugal about healthcare rationing, and compare them with the views of college students. A self-administered questionnaire was used to collect data from a sample of 60 healthcare professionals and 180 college students. Respondents faced a hypothetical rationing dilemma where they had to order four patients and justify their choices. Multinomial logistic regressions were used to test for differences in orderings, and content analysis to categorize the (...) written justifications. The findings suggest that both groups appeared to support three main rationing principles: health maximization, priority to the severely ill and priority to the young. However, professionals seemed to give less weight to the latter principle. In conclusion, professionals have similar views to students about healthcare rationing, though may be slightly less inclined to give priority to the young. (shrink)

The current article deals with the ethics and practice of physician-assisted suicide (PAS) and dying. The debate about PAS must take the important legal and ethical context of medical acts at the end of life into consideration, and cannot be examined independently from physicians’ duties with respect to care for the terminally ill and dying. The discussion in Germany about active euthanasia, limiting medical intervention at the end of life, patient autonomy, advanced directives, and PAS is not fundamentally different in (...) content and arguments from discussions led in other European countries and the United States. This must be emphasized, since it is occasionally claimed that in Germany a thorough discussion could not be held with the same openness as in other countries due to Germany’s recent history. Still, it is worthwhile to portray the debate, which has been held intensively both among experts and the German public, from the German perspective. In general, it can be stated that in Germany debates about questions of medical ethics and bioethics are taking place with relatively large participation of an interested public, as shown, for instance, by the intense recent discussions about the legalisation of advanced directives on June 18 2009, the generation and use of embryonic stem cells in research or the highly difficult challenges for the prioritizing and rationing of scarce resources within the German health care system. Hence, the current article provides some insights into central medical and legal documents and the controversial public debate on the regulation of end-of-life medical care. In conclusion, euthanasia and PAS as practices of direct medical killing or medically assisted killing of vulnerable persons as “due care” is to be strictly rejected. Instead, we propose a more holistically-oriented palliative concept of a compassionate and virtuous doctor-cared dying that is embedded in an ethics of care. (shrink)

This essay considers whether palliative sedation is or is not appropriate medical care. This requires one to consider whether, in addition to the good of health, relief of suffering is also a proper end of medicine; whether unconsciousness can ever be a good for a human being; and how double-effect reasoning can help us think about difficult cases. The author concludes that palliative sedation may be proper medical care, but only in a limited range of cases.

This article reviews four areas of pediatric research in which we have identified questionable levels of allowable risk, exceeding those foreseen by the Commission. They are the following: the categorization of increasingly risky interventions as minimal risk in a variety of protocols; the increasing number of applications for federal panel review of research not otherwise approvable because of higher projected risk levels; research on asymptomatic at risk children; and the inclusion of children and adolescents in placebo-controlled trials for participants of (...) all ages without performing subgroup analysis. While embracing the imperative to include children in research is an encouraging step towards providing the pediatric population with effective medical care and finally eradicating the therapeutic orphan, we must ensure that this research does not become overly permissive. (shrink)

Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention as such. It has (...) been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously. (shrink)