Non-beneficial paediatric research is vital to improving paediatric healthcare. Nevertheless, it is also ethically controversial. By definition, subjects of such studies are unable to give consent and they are exposed to risks only for the benefit of others, without obtaining any clinical benefits which could compensate those risks. This raises ethical concern that children participating in non-beneficial research are treated instrumentally; that they are reduced to mere instruments for the benefit of science and society. But this would make the research (...) incompatible with the widely endorsed principle of the primacy of the human subject, which stipulates that the interests of the participating individual should prevail over the interests of science and society. This paper deals with this conflict. It analyses solutions to this problem developed in the literature, and shows that they are unsuccessful. Finally, it offers a new idea of how to reconcile the conduct of non-beneficial paediatric research with the PP. The paper argues for a new formula of the PP, and shows that it implies a specific non-comparative definition of the minimal risk threshold. (shrink)

This paper targets an orphan topic in research ethics, namely the so called principle of the primacy of the human being, which states that the interests of the human subject should always take precedence over the interests of science and society. Although the principle occupies the central position in the majority of international ethical and legal standards for biomedical research, it has been commented in the literature mainly in passing. With a few notable exceptions, there is little in-depth discussion about (...) the meaning and role of the principle. Several authors note that the principle is vogue, ambiguous and apparently conflicting with the accepted practice of conducting non-beneficial research on individuals unable to give consent. There are opinions that it is just “a vacuous figure of speech” and should be abandoned. This paper argues that the primacy principle is far from being “a vacuous figure of speech”, rather it should be seen as a threefold concept: a fundamental interpretative rule, a procedural rule, and a substantive rule aimed at protecting research subjects from instrumental treatment and unacceptable risks. This interpretation tracks back to the principle regulatory and normative origins in the Declaration of Helsinki of 1975, but also acknowledges changes in research ethics and practice, which took place at the turn on the twentieth and twenty-first centuries. Thus, the proposed reading of the principle is not only original, but also historically grounded and normatively fruitful. It provides a fresh and ethically rich perspective on extensively debated, but still controversial problem of an upper limit of permissible risks in non-beneficial studies. (shrink)

The scope and role of theological bioethics has become a growing controversial topic. For instance, some bioethicists have adopted a strong stance on the meaning of “Christian bioethics,” as not ex...

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection (...) from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point. (shrink)

I reconsider the concept of dignity in several ways in this article. My primary aim is to move dignity in a more relational direction, drawing on care ethics to do so. After analyzing the power and perils of dignity and tracing its rhetorical, academic, and historical influence, I discuss three interventions that care ethics can make into the dignity discourse. The first intervention involves an understanding of the ways in which care can be dignifying. The second intervention examines whether the (...) capacity to care should be considered a distinguishing moral power – as rationality often is – in light of which humans have dignity. In the third intervention, I cast dignity as a fundamentally relational concept and argue that relationality is constitutive not only of dignity but also of the wider enterprise of normativity. I understand relationality as the condition of connection in which all human beings stand with some other human beings. A thought experiment involving the last person on earth helps to reframe the normative significance of human relatedness. Dignity emerges as fundamentally grounded in relationality. (shrink)

McCarthy, Homan, and Rozier’s call for a renewal of open and honest dialogue between secular and theologically grounded bioethics is admirable. Yet, their essay argues for more than mere dia...

Dignity is a universal principle that requires us to treat every person as having worth beyond who a particular person is or what they do. Dignity is a complex and sometimes contested idea, that at times can be compromised in health care and allegedly also within the practice of outdoor therapy. Outdoor therapies comprise a range of therapeutic approaches including nature-based therapy, adventure therapy, animal-assisted therapy, forest therapy, wilderness therapy, surf therapy, and more. Within the literature of outdoor therapies there (...) has been limited research on ethics related to common understandings of care concepts such as relational dignity and human rights. The aim of this paper is therefore to unravel briefly whether dignity in general, and relational qualities of dignified care more particularly, might be a useful concept to apply in order to support an ethical practice in outdoor therapies. (shrink)