Publicaciones sobre los aspectos éticos, legales y sociales de los biobancos entre 2011-2018. Una revisión panorámica / Ethical, legal and social issues publications on biobanks 2011-2018. A scoping review

OBJETIVO: Los biobancos, con muestras de origen humano, han sido definidos como agentes intermedios entre los donantes/participantes, la comunidad científica, el sistema sanitario y los pacientes. El objetivo de esta revisión fue aportar una revisión de la literatura internacional actualizada (2011-2018), que incluyera publicaciones en español y sintetizara los temas más publicados sobre los aspectos éticos, legales y sociales de los biobancos. MÉTODOS: Se llevó a cabo una revisión panorámica y un análisis temático de las publicaciones que abordaban los aspectos éticos, legales y sociales de los biobancos. Se realizaron búsquedas en las bases de datos Web of Science, SciELO y Dialnet. Se incorporaron publicaciones entre 2011-2018 con el término "biobank" o "biobanco" en inglés, español, portugués y francés. RESULTADOS: Se incluyeron 153 publicaciones. Los temas con más publicaciones fueron: consentimiento informado, el biobanco como herramienta científica, otras cuestiones éticas, participación ciudadana y regulación. Se encontró una clara diferencia entre las publicaciones en inglés y español. Las primeras se centraron en el giro participativo, mientras que las segundas se situaron más en una esfera técnica. CONCLUSIONES: Las publicaciones señalan la relevancia de los biobancos en la investigación biomédica contemporánea y futura, así como el entramado de instituciones y relaciones que los componen. Las cuestiones científico-técnicas de los biobancos no pueden separarse de las éticas, legales y sociales, ni relegarlas a un segundo plano, ya que se coproducen. La revisión sintetizó los temas y retos existentes para establecer unos biobancos transparentes, responsables, dinámicos y que fomenten la confianza ciudadana

BACKGROUND: Human-based biobanks have been presented as intermediary agents between donors/participants, the scientific community, the healthcare system, and patients. The objective of this systematic review was to contribute with an updated thematic synthesis in Spanish of the international literature (2011-2018) regarding ethical, legal, and social issues on contemporary biobanks. METHODS: A scoping review and thematic analysis were carried out on biobanks' ethical, legal, and social issues. The following databases were searched: Web of Science, SciELO, and Dialnet. The review included 2011-2018 publications with the term "biobank" or "biobanco" in English, Spanish, Portuguese, and French. RESULTS: A total of 153 publications were analyzed. The most published themes were: informed consent, biobanks as a scientific tool, other ethical issues, public engagement, and regulation. While documents published in English provide studies with a broader anthropologic approach and display the participatory turn, in Spanish a technical approach is more common. Aportar datos y cifras principales. CONCLUSIONS: Publications confirm and support biobanks' relevance in current and future biomedical research, but also illustrate the entanglement of a diverse range of healthcare institutions and relations. Biobanks' techno-scientific issues cannot be split from the ethical, legal, and social ones or place them as secondary; all of them are coproduced. This review points to current topics and challenges which need to be addressed to establish transparent, accountable, dynamic, and trust-worthy biobanks

Holding donated human bodies in conservation: A novel interactive safe-keeping system meeting high ethical and safety standards.

"Mortui vivos docent". Learning from donated bodies is widely considered a corner stone in pre-clinical education, advanced clinical training, and scientific progress in medicine. Making such use of dead human bodies must, of course, accord with high ethical standards and legal constraints. Piety and respect towards donors require using their remains (i) for valuable purposes, (ii) with what we call 'practical decency', (iii) in an efficient way, and (iv) with the utmost safety for all parties involved. With regard to these goals, practical aspects of preservation, safekeeping procedures (for up to several years), and complete documentation become of great importance, but have so far only been realized unsatisfactorily. Here, we describe the new Safe-Keeping System-Münster (SKS-Münster) that has been developed and implemented in the Anatomy Department of the University of Münster. Integrated components of the system include a paternoster transport system, a removal station with ventilation and an air barrier, RFID transponder technology, and an easy to use software package allowing the system together to provide all required functions in an unprecedented way.

On specimen killing in the era of conservation crisis - A quantitative case for modernizing taxonomy and biodiversity inventories.

BACKGROUND TO THE WORK: For centuries taxonomy has relied on dead animal specimens, a practice that persists today despite the emergence of innovative biodiversity assessment methods. Taxonomists and conservationists are engaged in vigorous discussions over the necessity of killing animals for specimen sampling, but quantitative data on taxonomic trends and specimen sampling over time, which could inform these debates, are lacking. METHODS: We interrogated a long-term research database documenting 2,723 land vertebrate and 419 invertebrate taxa from Madagascar, and their associated specimens conserved in the major natural history museums. We further compared specimen collection and species description rates for the birds, mammals and scorpions over the last two centuries, to identify trends and links to taxon descriptions. RESULTS: We located 15,364 specimens documenting endemic mammals and 11,666 specimens documenting endemic birds collected between 1820 and 2010. Most specimens were collected at the time of the Mission Zoologique Franco-Anglo-Américaine (MZFAA) in the 1930s and during the last two decades, with major differences according to the groups considered. The small mammal and bat collections date primarily from recent years, and are paralleled by the description of new species. Lemur specimens were collected during the MZFAA but the descriptions of new taxa are recent, with the type series limited to non-killed specimens. Bird specimens, particularly of non-passerines, are mainly from the time of the MZFAA. The passerines have also been intensely collected during the last two decades; the new material has been used to solve the phylogeny of the groups and only two new endemic taxa of passerine birds have been described over the last two decades. CONCLUSIONS: Our data show that specimen collection has been critical for advancing our understanding of the taxonomy of Madagascar's biodiversity at the onset of zoological work in Madagascar, but less so in recent decades. It is crucial to look for alternatives to avoid killing animals in the name of documenting life, and encourage all efforts to share the information attached to historical and recent collections held in natural history museums. In times of conservation crisis and the advancement in digital technologies and open source sharing, it seems obsolete to kill animals in well-known taxonomic groups for the sake of enriching natural history collections around the world.

View points of an ecologist on practical environmental ethic: socioecology, common-pool resources and conservation / Puntos de vista de un ecólogo sobre ética ambiental práctica: socio-ecología, recursos de acceso común y conservación

The paper centers on environmental practical ethic point of views according to a professional ecologist. Ecology and the science of Socio-ecology are defined. The framework of the Millennium Ecosystem Assessment initiative (MA 2003), including the use of ecosystems as the environmental unit of analysis, ecosystem services and human well-being as the center for assessment are discussed. Common-pool resources (CPR) and the allegory of the tragedy of the commons are used to illustrate main scientific and ethical environmental approaches, and above all to highlight the case of climate change, considering «air-atmosphere» as a CPR. The need to adopt practical personal environmental ethical positions is highlighted. Furthermore, on climate change, a discussion on the need to develop environmental and socio-ecological polycentric approaches: top-down and bottom-up, is included. An updated discussion on the concept of conservation, including main scientific and ethic points of view, is presented. Pope Francis’s Encyclical, Laudato Si’, is used to highlight environmental, socio-ecological and ethical aspects behind the comprehensive concept of Integral Ecology. The paper ends with a short synthesis on Earth modern unseen and astonishing environmental and socio-ecological rates of changes, and identifying the main barriers for personal environmental engagement. A call is done regarding the urgent need for socio-environmental ethic personal engagement and collective actions

El trabajo está centrado en torno a puntos de vista éticos ambientales prácticos de un ecólogo profesional. La Ecología y la ciencia de la Socio-ecología son definidas. El marco de referencia de la iniciativa Millennium Ecosystem Assessment (MA 2003), incluyendo a los ecosistemas como unidades de análisis ambiental, los servicios ecosistémicos y el bienestar humano, como el centro de las evaluaciones son discutidos. Los recursos de acceso común (RAC) y la alegoría de la tragedia de los comunes son usados para ilustrar las principales aproximaciones ambientales científicas y éticas, y en especial para destacar el caso del cambio climático, considerando al «aire-atmósfera» como un RAC. La necesidad de adoptar posiciones prácticas éticas ambientales es destacada. Además, en relación con el cambio climático, se presenta una discusión sobre la necesidad de desarrollar estrategias ambientales y socio-ambientales de tipo policéntricas: de arriba hacia abajo y de abajo hacia arriba. Adicionalmente, se entrega una discusión actualizada sobre el concepto de conservación, destacando las principales aristas científicas y éticas. La Encíclica del Papa Francisco, Laudato Si’, es usada para resaltar aspectos ambientales, socio-ecológicos y éticos contenidos en el concepto de Ecología Integral. El trabajo finaliza con una síntesis corta sobre las enormes y nunca antes experimentadas modernas tasas de modificaciones ambientales y socio-ecológicas en el planeta y con la identificación de las principales barreras que impiden una conexión y enganche verdadero y profundo de las personas con el socio-ambiente. Se realiza un llamado urgente en relación con la necesidad de sobrepasar dichas barreras y desarrollar acciones éticas ambientales tanto personales como colectivas

Outstanding ethical-legal issues on biobanks. An overview on the regulations of The Member States of the EuroBiobank project

En 2001, se creo EuroBiobank (EBB). Una red europea de bancos biológicos formado por 7 estados miembros que tiene como finalidad facilitar el acceso de recursos humanos biológicos de pacientes con enfermedades no comunes. Este estudio principalmente trata del debate ético-legal surgido en dichos estados, así como la regulación legal existente y las recomendaciones propuestas para su posible solución. Así mismo, se hace una mención especial al consentimiento informado, al posible fúturo uso de las muestras en relación a su comercialización como derechos de propiedad industrial y a la Directiva 2004/03 adoptada por el Parlamento Europeo el 31 de marzo de 2004

EuroBiobank (EBB) was created in 2001. This is a network of European biological banks made up by 7 member States. The purpose of the network is to ease the access to the biological resources of the human being in patients who suffer uncommon diseases. This study deals mainly with the ethical-legal debate that has arisen in those States, as well as the existing legal regulation and the proposed recommendations for its possible solution. Likewise, there is a special mention about the informed consent, the possible use in the future of the samples in relation to its commercial use as industrial property rights and to Directive 2004/03 that was adopted by the European Parliament 31 March, 2004

Real protection for the embryo

En este artículo se analiza fundamentalmente la actual protección que la Ley Italiana atribuye al embrión. Asimismo este autor, frente a los que opinan que el embrión es una persona sujeta a derecho, expone su polémica teoría en la que sitúa al embrión en el ámbito de las cosas. Concretamente, establece que el embrión tiene la categoría de cuasi-persona. Y para justificarlo, analiza la historia moral y legal del estatuto del embrión, diferencia la vida biológica de la vida legal y establece que el concepto de persona ha sido y será un concepto muy polémico, concluyendo su estudio con un análisis de la legislación italiana respecto a la protección del embrión

This article fundamentally analyses the current protection that the Italian law offers to the embryo. Likewise, the author, contrary to those who are of the opinion that the embryo is a person subject to law, exposes his polemic theory in which he places the embryo within the scope of things. Specifically, he argues that the embryo has a quasi-personal category. In order to justify this, he analyses the moral and legal history of the statute of the embryo, he makes a difference between the biological life and the legal life. The author establishes that the concept of the person has been and will continue to be a very controversial concept, concluding with a study on the Italian legislation in respect to the protection of the embryo

The status of the extracorporeal embryo in German Law

En la Républica Federal Alemana el legislador ha optado por una determinada solución legal en relación a la protección del embrión. Carola Müller describe en este artículo, dicha regulación legal, asi como las razones que han conducido para adoptarla. Finalizando con una exposición de la discusión social existente en la sociedad alemana y los efectos que dicha ley ha producido

The legislator, in the German Federal Republic, has opted for a specific legal solution in relation to the protection of the embryo. Carola Müller, in this article, describes this regulation as well as the reasons that have led to its adoption. The article finishes with an exposition of the existing social discussion in German society and the effect that the law has had

Rhetoric of Anonymity and Property Rights in Human Biological Materials (HBMs)

Partiendo del hecho de que la ciencia, el mercado y el derecho adoptan una particular visión respecto a los recursos biológicos humanos reduciendo su concepto a mera información biológica, con el fin de que dichos recursos sean accesibles para la ciencia. Mariachiari Tallacchini ha realizado un análisis exhaustivo sobre la existencia o inexistencia del derecho de propiedad sobre los recursos biológicos humanos, el uso de estos y el consentimiento que el sujeto debe dar para su utilización

This article starts with the fact that science, the marketplace and the law adopt a particular vision in regards to the human biological resources that reduce them to a concept of mere biological information. The object of such vision is to make such resources available to science. Mariachiari Tallacchini has undertaken an exhaustive analysis on the existence or not of the right to property on the human biological resources, their use and the consent of the subject in order for its use

Outstanding ethical-legal issues on biobanks. An overview on the regulations of The Member States of the EuroBiobank project

En 2001, se creo EuroBiobank (EBB). Una red europea de bancos biológicos formado por 7 estados miembros que tiene como finalidad facilitar el acceso de recursos humanos biológicos de pacientes con enfermedades no comunes. Este estudio principalmente trata del debate ético-legal surgido en dichos estados, así como la regulación legal existente y las recomendaciones propuestas para su posible solución. Así mismo, se hace una mención especial al consentimiento informado, al posible fúturo uso de las muestras en relación a su comercialización como derechos de propiedad industrial y a la Directiva 2004/03 adoptada por el Parlamento Europeo el 31 de marzo de 2004

EuroBiobank (EBB) was created in 2001. This is a network of European biological banks made up by 7 member States. The purpose of the network is to ease the access to the biological resources of the human being in patients who suffer uncommon diseases. This study deals mainly with the ethical-legal debate that has arisen in those States, as well as the existing legal regulation and the proposed recommendations for its possible solution. Likewise, there is a special mention about the informed consent, the possible use in the future of the samples in relation to its commercial use as industrial property rights and to Directive 2004/03 that was adopted by the European Parliament 31 March, 2004

Real protection for the embryo

En este artículo se analiza fundamentalmente la actual protección que la Ley Italiana atribuye al embrión. Asimismo este autor, frente a los que opinan que el embrión es una persona sujeta a derecho, expone su polémica teoría en la que sitúa al embrión en el ámbito de las cosas. Concretamente, establece que el embrión tiene la categoría de cuasi-persona. Y para justificarlo, analiza la historia moral y legal del estatuto del embrión, diferencia la vida biológica de la vida legal y establece que el concepto de persona ha sido y será un concepto muy polémico, concluyendo su estudio con un análisis de la legislación italiana respecto a la protección del embrión

This article fundamentally analyses the current protection that the Italian law offers to the embryo. Likewise, the author, contrary to those who are of the opinion that the embryo is a person subject to law, exposes his polemic theory in which he places the embryo within the scope of things. Specifically, he argues that the embryo has a quasi-personal category. In order to justify this, he analyses the moral and legal history of the statute of the embryo, he makes a difference between the biological life and the legal life. The author establishes that the concept of the person has been and will continue to be a very controversial concept, concluding with a study on the Italian legislation in respect to the protection of the embryo

The status of the extracorporeal embryo in German Law

En la Républica Federal Alemana el legislador ha optado por una determinada solución legal en relación a la protección del embrión. Carola Müller describe en este artículo, dicha regulación legal, asi como las razones que han conducido para adoptarla. Finalizando con una exposición de la discusión social existente en la sociedad alemana y los efectos que dicha ley ha producido

The legislator, in the German Federal Republic, has opted for a specific legal solution in relation to the protection of the embryo. Carola Müller, in this article, describes this regulation as well as the reasons that have led to its adoption. The article finishes with an exposition of the existing social discussion in German society and the effect that the law has had

Rhetoric of Anonymity and Property Rights in Human Biological Materials (HBMs)

Partiendo del hecho de que la ciencia, el mercado y el derecho adoptan una particular visión respecto a los recursos biológicos humanos reduciendo su concepto a mera información biológica, con el fin de que dichos recursos sean accesibles para la ciencia. Mariachiari Tallacchini ha realizado un análisis exhaustivo sobre la existencia o inexistencia del derecho de propiedad sobre los recursos biológicos humanos, el uso de estos y el consentimiento que el sujeto debe dar para su utilización

This article starts with the fact that science, the marketplace and the law adopt a particular vision in regards to the human biological resources that reduce them to a concept of mere biological information. The object of such vision is to make such resources available to science. Mariachiari Tallacchini has undertaken an exhaustive analysis on the existence or not of the right to property on the human biological resources, their use and the consent of the subject in order for its use