The rights of the dying child and the duties of healthcare providers: the "Trieste Charter".

PURPOSE: The death of a child is a devastating and tragic event for all those involved. This charter aims to help healthcare workers and people assisting terminally ill children to recognize some important rights of the child, with some related suggestions. We consider it important to have a trace of this process, based on the skillfulness of long-lasting experts. METHODS: In September 2012, a group of professionals working with children affected by incurable illness in Italy launched a project to formulate the charter. Trieste is the city where the group of professionals first met to start the project. The first step was a detailed literature search on the topic, the second step was an extensive discussion among the professionals (writing committee) to prepare a first draft; later (third step) the draft was revised by 38 experts in different areas, including patient and family representatives, and lastly (fourth step) the final version of the charter was prepared. RESULTS: We developed a document containing 10 rights and corresponding duties that could be applied to any clinical situation or circumstances and used as a guide by professionals and families caring for children in the terminal stages of an illness. CONCLUSIONS: The Trieste Charter proposes fundamental rights for children who are approaching the end of their lives. The charter will have achieved its purpose when every person caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity.

Shared genetic data and the rights of involved people

Los autores repasan las dos posturas principales hacia la genética: el excepcionalísimo y la infravaloración. Primero presentan la materia desde un punto de vista científico y luego verifican como funcionan en realidad esas dos posturas en los diferentes casos en la que la genética humana encuentra aplicaciones relevantes, tratando los temas que surgen de las características únicas de la información genética que es compartida entre todo el bio-grupo. A continuación se trata y discute algunos casos judiciales relacionados con conflictos que surgen del almacenamiento de la información genética en depósitos, cualquiera que sea los objetos o razones. Luego se analiza desde el punto de vista del derecho penal, en función de las nuevas y posibles implicaciones de las huellas de ADN en investigaciones criminales. Finalmente, se presentan las ideas generales para oponerse a las perspectivas del excepcionalismo o la infravaloración y se presenta la verdadera razón para crear nuevas reglas

The authors examine the two main attitudes toward genetic. Exceptionalism and Undervaluation. They firstly pose the basis of the matter from the scientific point of view and then verify how these two attitudes really work in the different fields where human genetics finds relevant applications, dealing with the questions arising from the unique characteristics of genetic data that is shared among the whole bio-group. Then some judicial cases related to the conflicts arising when genetic data are stored in repositories, whatever the aims and reasons. Are presented and discussed. The matter is then considered from the criminal law perspective, in the light of the new possible implications of DNA fingerprinting in criminal investigations. Finally, some general considerations on opposing Exceptionalism/Undervaluation viewpoints and the real reason for making up new rules are presented

Shared genetic data and the rights of involved people.

The authors examine the two main attitudes toward genetics: Exceptionalism and Undervaluation. They firstly pose the basis of the matter from the scientific point of view and then verify how these two attitudes really work in the different fields where human genetics finds relevant applications, dealing with the questions arising from the unique characteristics of genetic data that is shared among the whole bio-group. Then some judicial cases related to the conflicts arising when genetic data are stored in repositories, whatever the aims and reasons, are presented and discussed. The matter is then considered from the criminal law perspective, in the light of the new possible implications of DNA fingerprinting in criminal investigations. Finally, some general considerations on opposing Exceptionalism/Undervaluation viewpoints and the real reason for making up new rules are presented.

Science and the courts: a fruitful experiment of interaction.

The authors report on the European Seminar on Hot Genetic Issues and the Courts, held in Pavia (I), September 2005. They examine the new possible concerns regarding bio-sciences practical applications and the stronger need for a closer interaction between jurists, judges and scientists. They highlight the importance of the ENLSC's networking experience in judicial education and the originality of its approach.

Science and the Courts: a fruitful experiment of interaction / Science and the Courts: a fruitful experiment of interaction

Los autores presentan el informe llevado a cabo en el seminario “European Seminar on Hot Genetic Issues and the Courts” que tuvo lugar en Pavia en septiembre de 2005. Estudian los posibles problemas de aplicación práctica de la biociencia y la fuerte necesidad de una interacción más cercana entre juristas y científicos. Acentúan la importancia de la experiencia de contactos de la ENLSC en la educación judicial y la originalidad de su planteamiento

The authors report on the European Seminar on Hot Genetic Issues and the Courts, held in Pavia (I), September 2005. They examine the new possible concerns regarding bio-sciences practical applications and the stronger need for a closer interaction between jurists, judges and scientists. They highlight the importance of the ENLSC´s net working experience in judicial education and the originality of its approach