In a previous paper in the Journal of Medical Ethics, the authors argued that the research ethical principle stating that the individual shall have priority over science, found in many guidelines, is utterly unclear and because of this should be explicated or otherwise deleted. In a recent commentary, Parker argued that this leaves us defending a position that would allow totalitarian regimes to pursue glory at the expense of its citizens. The present response addresses this and similar accusations.

This paper argues that some of the misunderstandings surrounding the meaning and function of the concept of human dignity in bioethics arise from a lack of distinction between two different roles that this notion plays: one as an overarching policy principle, and the other as a moral standard of patient care. While the former is a very general concept which fulfils a foundational and a guiding role of the normative framework governing biomedical issues, the latter reflects a much more concrete (...) and context-specific understanding of the patient as a “person”. The importance of dignity as a policy principle will be described by appealing to the distinction between principles and rules as developed by some legal philosophers. The value of dignity as a standard of patient care will be illustrated with the help of concrete examples and by drawing on the taxonomies of dignity proposed by Jonathan Mann and other scholars. The overall scope of the article is to highlight this double and complementary role of human dignity in bioethics. (shrink)

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)

El artículo destaca la importancia de distinguir entre dos roles diversos que la noción de dignidad humana juega en bioética: uno, como principio de orden jurídico-político, y otro, como estándar moral del trato debido al paciente. Cuando la dignidad es entendida en el primer sentido, nos encontramos con un concepto muy general, que cumple un rol fundacional y de orientación de las normas relacionadas con las prácticas biomédicas. En cambio, cuando es utilizada en el segundo sentido, intenta captar la exigencia (...) moral de tratar siempre al paciente como “persona”, es decir, con el mayor cuidado y respeto. Para clarificar el significado de la dignidad como principio, se apela a la distinción entre principios y normas elaborada en el campo de la filosofía jurídica. La dignidad como estándar moral de la relación médico-paciente se ilustra en base a una serie de estudios empíricos. (shrink)