Littérature scientifique sur le sujet « Biobanca »
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Articles de revues sur le sujet "Biobanca"
1
Meškys, Edvinas. « BIOBANKŲ SAMPRATA IR STATUS QUO LIETUVOJE ». Teisė 92 (11 février 2015) : 80–95. http://dx.doi.org/10.15388/teise.2014..3908.
Texte intégralRésumé :
Šiame straipsnyje siekiama atskleisti žmogaus biobanko sampratą ir parodyti šios sampratos įvairiapusiškumą užsienio šalių praktikoje, dėl kurio dažnai atsiranda teisinių kliūčių bendrai plėtoti tarpvalstybinius ar tarptautinius mokslinius projektus, kurti europinį biobankų tinklą. Kartu bandoma palyginti biobanką su kitomis biologinių mėginių kolekcijomis ir nustatyti, koks biobanko apibrėžimas galėtų būti priimtinas Lietuvoje. Galiausiai, daug dėmesio straipsnyje skiriama atskirų Lietuvos Respublikos įstatymų analizei, siekiant įvertinti, ar esama teisinė aplinka sukuria pakankamą pagrindą kurti ir plėtoti specifinius mokslinius biobankus Lietuvoje. Šis straipsnis – įvadas į daug detalesnę, su moksliniais biobankais susijusių probleminių klausimų analizę.
This article aims to reveal the definition of human biobank and show the diversity of this definition in foreign countries‘ practice, which often creactes legal barriers for development of intercountry or international scintific research projects, creation of European biobanks‘ network. Additionally, this article aims to compare the biobank with other collections of biological materials and identify the most appropriate definition for Lithuania. Finally, considerable attention is paid for the analysis of separate laws of the Republic of Lithuania in order to evaluate if exsiting legal framework creates a sufficient ground for establishment and development of specific research biobanks in Lithuania. This article is a introduction to a more detailed analysis of the problematic aspects of research biobanks.
2
Meškys, Edvinas. « TRADICINIO INFORMUOTO ASMENS SUTIKIMO PRITAIKYMO MOKSLINIAMS BIOBANKAMS LIETUVOJE GALIMYBĖS ». Teisė 92 (11 février 2015) : 96–108. http://dx.doi.org/10.15388/teise.2014..3907.
Texte intégralRésumé :
Šiame straipsnyje siekiama įvertinti medicinos praktikoje išvystyto informuoto asmens sutikimo pritaikymo problematiką mokslinių biobankų veikloje, tai yra, paimant, tvarkant ir atliekant tyrimus su iš žmogaus gauta biologine medžiaga (organais ar jų dalimis, audiniais, ląstelėmis ar jų komponentais), su šia medžiaga susijusia medicinine ar kita asmenį identifikuojančia informacija. Straipsnyje analizuojama, ar nežinant mokslinio tyrimo tikslo, jo trukmės ir galimų padarinių, bei galimo kito, nei buvo išreikštas sutikimas, panaudojimo tikslo asmuo gali būti laikomas tinkamai sutikęs dalyvauti biobanko tyrimuose. Šis klausimas yra ypač problemiškas analizuojant aktyviąją teisės žinoti apie savo sveikatą pusę, t. y. kai asmuo renkasi aktyvų domėjimąsi savo sveikata, nori gauti informacijos. Kartu sprendžiama, ar asmuo turi teisę autonomiškai prisiimti riziką gaudamas ribotą informaciją iš biobankų (tyrėjų), ir jeigu taip, tai kokiais teisiniais būdais būtų galima šių teisinių rizikų išvengti arba jas sumažinti.
This article aims to assess the problematic of the applicablity of the informed consent, which was developed in the clinical practice, for the practice of the research biobanks, that is, taking, managing and conducting research with human biological material (organs or its parts, tissues, cells or their components), linked medical data or other informacion, which identifies the person. This article examines whether the lack of knowledge about the research objectives, duration of the research projects and possible consequences, as well as possible other, than expressed by the consent, purpose of use of such material, allows us to deem that the person has duly agreed to participate in biobank research. This question is specifically problematical, when analyzing the actine side of the rigzt to know about self health, i.e., when the person chooses the active interest in his health, wants to get the information. It is also being analyzed whether the person has the right to autonomously take the risk of receiving limited information from biobanks, and, if so, what legal safeguards would allow to avoid these legal risks or reduce them.
3
Veloza Cabrera, Luis Alberto, Carolina Wiesner Ceballos, Martha Lucía Serrano López, Nelsy Ruth Peñaranda Correa et Antonio Huertas Salgado. « Consideraciones éticas y legales de los biobancos para investigación ». Revista Colombiana de Bioética 5, no 1 (19 novembre 2015) : 121. http://dx.doi.org/10.18270/rcb.v5i1.1287.
Texte intégralRésumé :
<p> Un biobanco es una colección de muestras biológicas y datos asociados con fines diagnósticos, terapéuticos o de investigación. Las actividades llevadas a cabo por los bancos de muestras biológicas conllevan muchos dilemas éticos y legales, por lo que en el ámbito internacional existen diversas normas y recomendaciones establecidas para salvaguardar los derechos de los donantes. En Colombia, el Instituto Nacional de Cancerología considera prioritario la creación de un biobanco con fines de investigación. El propósito de este artículo es realizar una revisión de la literatura, internacional como nacional, sobre los aspectos éticos y legales relacionados con los biobancos para investigación científica. La adaptación de los requerimientos internacionales sería el primer paso para la implementación de los estándares éticos y legales de los biobancos en Colombia. Se hace necesario el establecimiento de regulaciones nacionales que controlen las actividades de dichos biobancos y de esta manera se contribuya a la participación activa de la sociedad colombiana.</p>
4
Salokannel, Marjut, Heta Tarkkala et Karoliina Snell. « Legacy samples in Finnish biobanks : social and legal issues related to the transfer of old sample collections into biobanks ». Human Genetics 138, no 11-12 (16 octobre 2019) : 1287–99. http://dx.doi.org/10.1007/s00439-019-02070-0.
Texte intégralRésumé :
Abstract Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regulating biobank operations came into force. Since then, ten biobanks have been established and they have started to collect new prospective samples with broad consent. The main corpus of biobank samples, however, consists of approximately 10 million “legacy samples”. These are old diagnostic or research samples that were transferred to biobanks in accordance with the Biobank Act. The focus of this article is on ambiguities concerning these legacy samples and their transfer in terms of legality, human rights, autonomy, and social sustainability. We analyse the Finnish biobank operations in the context of international regulation, such as the European Convention of Human Rights, the Oviedo Convention, European Charter of Fundamental Rights, the GDPR, and EU Clinical Trials Regulation, and show that the practice of using legacy samples is at times problematic in relation to this regulatory framework. We argue that the prevailing interpretations of these regulations as translated into the Finnish biobank practices undermine the autonomy of individuals by not giving individuals a right to consent or an actionable right to opt-out of the transfer of these legacy samples to the biobank. This is due to the fact that individuals are not given effective notification of such transfers. Thus, issues regarding the legal status of the biobank samples and the social sustainability of biobank operations remain a challenge for biobanks in Finland despite governmental efforts to create pioneering, comprehensive, and enabling legislation.
5
Artene, Stefan-Alexandru, Marius Eugen Ciurea, Stefana Oana Purcaru, Daniela Elise Tache, Ligia Gabriela Tataranu, Mihaela Lupu et Anica Dricu. « Biobanking in a Constantly Developing Medical World ». Scientific World Journal 2013 (2013) : 1–5. http://dx.doi.org/10.1155/2013/343275.
Texte intégralRésumé :
Biobank is a very sophisticated system that consists of a programmed storage of biological material and corresponding data. Biobanks are created to be used in medical research, in clinical and translational medicine, and in healthcare. In the past 20 years, a large number of biobanks have been set up around the world, to support the modern research directions in medicine such as omix and personalized medicine. More recently, embryonic and adult stem cell banks have been developed. Stem cell banking was reported to be required for medical research as well as clinical transplant applications. The quality of the samples stored in a biobank is very important. The standardization is also important; the biological material stored in a biobank must be processed in a manner that allows compatibility with other biobanks that preserve samples in the same field. In this paper, we review some issues related to biobanks purposes, quality, harmonization, and their financial and ethical aspects.
6
Verlinden, Michiel, Herman Nys, Nadine Ectors et Isabelle Huys. « Access to Biobanks : Harmonization Across Biobank Initiatives ». Biopreservation and Biobanking 12, no 6 (décembre 2014) : 415–22. http://dx.doi.org/10.1089/bio.2014.0034.
Texte intégral
7
Kryukova, E. S., et V. D. Ruzanova. « Legal regime of biobanks in domestic legislation ». Juridical Journal of Samara University 7, no 1 (7 juillet 2021) : 57–62. http://dx.doi.org/10.18287/2542-047x-2021-7-1-57-62.
Texte intégralRésumé :
In the article on the basis of a critical analysis of the existing positions in the doctrine the concept of a biobank as an object of rights was formulated. At the same time, it is proposed to distinguish between the organizations in charge of biobanks and the collections themselves. It was concluded that biobank is a complex object, which is differentiated unity, since its elements, on the one hand, are autonomous, but on the other hand, are interconnected and interdependent. It is emphasized that the formation of a single legal regime of biobanks is complicated by the substantive heterogeneity of this object and the diversity of its elements. Taking into account the experience of European States in this field of legal regulation and scientific views, the idea of publishing as a basic special law on biobanks, which should establish their legal regime as an object of rights and rules for organizations under the jurisdiction of biobanks, was supported. The need for organizations working with biobanks to provide unprecedented protection is proven. The structure of the legal regime of biobank has been determined and as its most important component a group of rules on obtaining the consent of the holder for the further use of biobanks and data derived from them has been identified. The feasibility of introducing more diverse forms of consent to the circulation of the contents of biobanks is justified.
8
Kaye, Jane, Jessica Bell, Linda Briceno et Colin Mitchell. « Biobank Report : United Kingdom ». Journal of Law, Medicine & ; Ethics 44, no 1 (2016) : 96–105. http://dx.doi.org/10.1177/1073110516644202.
Texte intégralRésumé :
The United Kingdom is a leader in genomics research, and the presence of numerous types of biobanks and the linking of health data and research within the UK evidences the importance of biobank-based research in the UK. There is no biobank-specific law in the UK and research on biobank materials is governed by a confusing set of statutory law, common law, regulations, and guidance documents. Several layers of applicable law, from European to local, further complicate an understanding of privacy protections. Finally, biobanks frequently contain data in addition to the samples; the legal framework in the UK generally differentiates between data and samples and the form of the data affects the applicability of legal provisions. Biobanks must be licensed by the Human Tissue Authority; certain projects must be reviewed by Research Ethics Committees, and all projects are encouraged to be reviewed by them. Data Access Committees in biobanks are also common in the UK. While this confusing array of legal provisions leaves privacy protections in biobanking somewhat unclear, changes at the EU level may contribute to harmonization of approaches to privacy.
9
Cervo, Silvia, Paolo De Paoli, Tiziana Perin, Vincenzo Canzonieri et Agostino Steffan. « Cost-Effective Organization of an Institutional Human Cancer Biobank in a Clinical Setting : CRO-Biobank Experience Toward Harmonization ». International Journal of Biological Markers 30, no 2 (avril 2015) : 243–51. http://dx.doi.org/10.5301/jbm.5000138.
Texte intégralRésumé :
This report describes the organization of the Biobank of the CRO Aviano National Cancer Institute, Aviano (CRO- Biobank), Italy, implemented as a structured facility dedicated to collecting human biological samples. It describes a particular disease-specific biobank and the integration of a research biobank in a clinical setting. The CRO-Biobank's mission is rooted in supporting and implementing cancer research, with its main focus on optimizing technical and quality processes, while also investigating ethical, legal and IT topics. The CRO-Biobank has implemented processes aimed at guaranteeing the safety of the providers, protecting patient privacy and ensuring both the traceability and quality of its samples. Our 8 years of experience allow us to offer insights and useful suggestions that may solve theoretical and practical issues that can arise when starting up new biobanks or developing existing biobanks further.
10
Jiménez-Gómez, Giovanny, María L. Luna-González, Silvia Becerra-Bayona, Norma Serrano Díaz, Elizabeth Guio-Mahecha et René Lobo-Quintero. « Aplicación de las TIC para monitoreo remoto de biobancos con fines de investigación ». Revista Facultad de Ciencias de la Salud UDES 4, no 2.S1 (30 juin 2017) : 18. http://dx.doi.org/10.20320/rfcsudes.v4i2.s1.r05.
Texte intégralRésumé :
Introducción. Los biobancos se encargan de gestionar colecciones de material biológico (MB) con fines diagnósticos o de investigación biomédica, por lo cual deben estar organizados como unidades técnicas con criterios de calidad, orden y destino. La Universidad Autónoma de Bucaramanga cuenta con un biobanco formado por ocho ultracongeladores que contienen MB colectado en proyectos de investigación y que requiere de supervisión para garantizar un entorno óptimo. Objetivo. Diseñar y validar un sistema de monitoreo para un biobanco utilizando hardware libre que vigile de manera constante las condiciones de almacenamiento del MB. Materiales y métodos. Se llevó a cabo la revisión bibliográfica (biobancos, sistemas de monitoreo e internet de las cosas-IoT) para posteriormente recopilar los requerimientos funcionales y no funcionales del biobanco y definir la tecnología de hardware libre a emplear para realizar el diseño y la validación del prototipo de monitoreo. Resultados. Se seleccionaron los sensores para capturar las variables ambientales y físicas de temperatura interna y tensión de entrada del ultracongelador, temperatura y humedad del ambiente, inundación del área y detección de sonido de alarmas emitidas por ultracongeladores. A continuación, se ensamblaron en el hardware libre (Arduino) y se crearon las variables de conexión y captura de los datos enviados por los sensores al software para IoT (ThingSpeak). Conclusiones. El monitoreo remoto de biobancos mediante el uso de tecnologías libres, permite garantizar la integridad del MB almacenado a un menor costo, y por tanto, mayor accesibilidad a este recurso.
Thèses sur le sujet "Biobanca"
1
COSENZA, Lucia Carmela. « Cellular and biomolecular technologies for stratification of β thalassemia patients : applications in theranostics ». Doctoral thesis, Università degli studi di Ferrara, 2015. http://hdl.handle.net/11392/2389112.
Texte intégralRésumé :
The research described in the present PhD Thesis has been conducted in the context of a multicenter FP7 European Project called THALAMOSS (THalassemia MOdular Stratification System), having as major objective the identification of molecular markers for the development of personalized therapies for hemoglobinopathies, in particular ß-thalassemia.
The ß-thalassemias are an autosomal recessive genetic disorders caused by the absence or reduction of ß-globin chains of adult hemoglobin, for which targeted and definitive treatments are, at present, not available.
In order to sustain project based on stratification of ß-thalassemia patients according to clinical, genetic and molecular features, we established a systematic collection of cellular samples, the cellular Biobank, containing hematopoietic stem cells isolated from the peripheral blood, expanded, freezed and cryopreserved.
To this aim, 75 subjects comprising ß-thalassemia patients and healthy donors have been recruited up to now. They were all characterized for the genotype (in order to detect pathogenic mutations) and possible fetal hemoglobin (HbF)-associated polymorphisms. More importantly, new protocols to efficiently isolate, culture, freeze and thaw hematopoietic stem cells were developed. In particular, we demonstrated that freezing, cryopreservation and thawing steps do not affect the erythroid differentiation potential of the cells and the natural erythroid differentiation process, in terms of kinetics and types of hemoglobin produced by the cells of the same patient.
Moreover, we found that the cells stored in the Biobank are responsive, once thawed and sub-cultured, to treatments with known HbF inducers, including mithramycin, resveratrol, butyric acid and hydroxyurea, and are therefore suitable for the identification and development of new HbF inducers to be used for experimental therapeutic strategy for ß-thalassemia. In this context, we demonstrated that the induction effects depend on the subject’s genotype, strongly suggesting that this approach could be very useful to develop personalized therapies.
In conclusion, this research activity will allow patients stratification taking into account all the phenotypic/genotypic characteristics of the single individual, in association with in vitro HbF induction under treatment with effective inducers, providing an important opportunity for the research and development of novel therapeutic strategies for ß-thalassemia.
2
POZZI, STEFANO. « Caratterizzazione del trascrittoma di PBMCs di pazienti affetti da aneurisma dell'aorta addominale e da ostruzione carotidea ». Doctoral thesis, Università degli Studi di Milano-Bicocca, 2009. http://hdl.handle.net/10281/7479.
Texte intégralRésumé :
Atherosclerosis (also known as Arteriosclerotic Vascular Disease or ASVD) is the condition in which an artery wall thickens as the result of a build-up of fatty materials such as cholesterol. It is a syndrome affecting arterial blood vessels, a chronic inflammatory response in the walls of arteries, in large part due to the accumulation of macrophage white blood cells and promoted by Low-density lipoproteins (plasma proteins that carry cholesterol and triglycerides) without adequate removal of fats and cholesterol from the macrophages by functional high density lipoproteins (HDL). It is commonly referred to as a hardening or furring of the arteries. It is caused by the formation of multiple plaques within the arteries.
Other arteriosclerotic disease is aortic aneurysm usually affecting the abdominal tract of the vessel.
The prevalence of abdominal aortic aneurysm (AAA) varies ranging from 4.1% to 11.5% in European men.
This disorder is characterized by localized structural deterioration of the aortic wall, leading to progressive dilatation and eventual
aortic rupture. Rupture of AAA is responsible for 1.5% of
the total mortality in males over 55 years of age.
Both disease seem to share common causes in alteration in lipid metabolism and immune response against host and oxidised lipids, leading to a condition of chronic inflammation affecting all the vascular system, especially the big diameter arteries.
There are several factors such as smoking, hypertension, hypercholesterolemia and male sex, which are well known risk factors for the development of AAA and carotid stenosis. However, better understanding of molecular mechanisms is an important step toward clarification of the pathophysiology, identification of genetic and molecular biomarkers and development of new therapeutic strategies for AAA and atherosclerosis in general.
Gene expression profiling studies by microarray technologies are particularly appropriate to investigate and create working hypotheses to understand the pathophysiology of complex genetic tracts such as arteriosclerotic diseases. Previous microarray studies focused on AAA utilized RNA derived from aortic tissue samples. The use of tissue samples has several disadvantages, including the difficulty of obtaining control samples and bias introduced by use of normal specimens from non-age-matched cadavers, organ-transplant donors or patients with different diseases. Peripheral blood is a complex fluid with a high cellular turnover rate that provides physiological connectivity between tissues. Environmental or disease perturbations in the body may leave molecular signatures detectable by analyzing blood-derived RNA. Most importantly, since blood samples can be obtained readily and with little discomfort to patients, biomarkers derived from blood RNA provide an easier integration to clinical and imaging data for the diagnosis and prognosis of AAA and carotid stenosis.
In this study we investigate the gene expression profile of venous whole peripheral blood obtained from AAA patients by using microarray technology to provide insight into systemic pathophysiological processes involved in this disease.
Using the data obtained from the microarray analysis from which we detected 91 genes differentially expressed from patients and positive controls, we selected 10 gene belonging to pathways involved in lipid metabolism and immune response to deep our analysis and eventually confirm the microarray data in order to set up new reliable parameters for arteriosclerosis diseases diagnosis and prognosis.
The genes we chosen are
Lipid Metabolism:
8. Monoglyceride lipase - MGLL - U67963 - 11343
9. Free fatty acid receptor 2 - FFAR2 - AF024690 – 2867
10. Adiponectin receptor 1 - ADIPOR1 - AK001484 – 51094
11. Phospholipase A2, group IB (pancreas) - PLA2G1B - M21054 – 5319
12. Hydroxysteroid (17-beta) dehydrogenase 14 - HSD17B14 - NM_016246 3738
13. Acyl-Coenzyme A dehydrogenase, C-2 to C-3 short chain - ACADS Z80345 – 682
14. Low density lipoprotein receptor-related protein 5 - LRP5 - AF077820 - 4041
Immune system:
4. Toll-like receptor adaptor molecule 1 - TICAM1 - AF070530 - 7746
5. Interleukin 1 receptor accessory protein-like 1 - IL1RAPL1 - AJ243874 11141
6. Tumor necrosis factor type 1 receptor-associated protein - TRAP1 NM_016292 – 10131
We designed 10 couples of primers to analyze the expression levels of the genes onto 3 groups of subjects:
1. Control: N=40
2. AAA patients: N=40
3. Patients affected from carotid artery stenosis: N=40
We first analyze the expression levels of the control gene GAPDH of each subject and than we check the expression levels of the all ten genes comparing the resulting CT values with the ones gotten from the housekeeping gene. The result is the so-called ∆CT and we got these values for all the 120 subjects for everyone of the 10 genes in duplicates for a total of 1200 ∆CT values.
Than we compare the average ∆CT values of the 80 patients (40 AAA + 40 carotid stenosis) with the control values to get the ∆∆CT values from which calculate the fold number (2-∆∆CT =FOLD) that provides a numeric but qualitative value of the expression level of the target gene that allow to compare the values with others present in literature.
Our analysis are only semiquantitative for the moment but we first needed to check the reliability of the experimental approach.
For the future studies we are going to use Taqman® probes to rise the specificity and sensitivity of the analysis, introducing a quantitative method using titolation commercial kit that allow to quantify the exact numbers of copies of an m-RNA transcript calculating the exact amount of m-RNA by substituting the CT values in a linear equation.
We confirmed the microarray data and extended the results to the carotid stenosis patients.
We were able to confirm the genes upregulation and hypothesise that PBMCs could be a suitable base for the detection of novel risk and prognostic indicators for the arteriosclerotic diseases.
In fact our aim is to identify new easy-to-detect markers to predict the risk of developing an artery stenosis or most important, an aneurismatic lesion that is symptomless until the very late phases and whose success in treating is proportional to well-timed diagnosis.
In the end seems that the right direction to look into are the metabolism of lipids and phospholipids, that are involved in eicosanoids production and degradation (via fatty acid metabolism) and cell signalling in the immune system.
3
Bozzetti, Rodrigo Porto. « A dimensão informacional e documental dos biobancos : uma análise do UK Biobank ». Instituto Brasileiro de Informação em Ciência e Tecnologia/Universidade Federal do Rio de Janeiro, 2016. http://ridi.ibict.br/handle/123456789/888.
Texte intégralRésumé :
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Investiga as dimensões informacionais e documentais dos dispositivos infocomunicacionais biobancos. Apresenta breve histórico sobre os processos de formação da genética como um campo de estudos. Realiza uma apresentação do conceito de biobanco demonstrando os propósitos e principais atividades realizadas. Discute sobre Eugenia e sobre potenciais usos sensíveis de informações genéticas. Discute o conceito de documento, tendo por base os trabalhos de Otlet, Briet, Meyriat, Frohmann entre outros autores da Ciência da Informação, no intuito de defender que amostras biológicas de seres humanos podem ser consideradas como documentos. Discute o conceito de dispositivo infocomunicacional na Ciência da Informação. Aponta o UK Biobank como unidade de análise para se estudar os biobancos a nível mundial e investiga o funcionamento, a estrutura, os documentos e os mecanismos de proteção de informações sigilosas desse biobanco tendo por principal fonte de informação o seu portal. Apresenta os biobancos como dispositivos que tem o potencial de classificar e criar taxonomias de seres humanos, potencializando a capacidade de gerar problemas de cunho ético aos envolvidos nas pesquisas.
Investigates the informational and documentary dimensions of infocommunicative devices biobanks. Presents brief history about the genetics as a field of study. Performs a presentation of the concept of biobank demonstrating the purpose and main activities. Discusses Eugenics and potential sesitive uses of genetic information. Discusses the concept of document, based on the work of Otlet, Briet, Meyriat, Frohmann among other authors of Information Science, in order to argue that biological samples from humans can be considered as documents. Discusses the concept of infocomunicacional device in Information Science. Pointing UK Biobank as units of analysis to study biobanks worldwide and investigates the operation, structure, documents and mechanisms of protection of sensitive information of this biobank usings it’s website as main source of information. It presents biobanks as devices that have the potential to classify and create taxonomies of humans, increasing the capacity to generate ethical problems to the people involved in the research.
4
Breimelyte, Jurate. « Open Biobanks. Reframing intellectual property rights in biobanking ». Doctoral thesis, Universitat Autònoma de Barcelona, 2018. http://hdl.handle.net/10803/664270.
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Esta tesis se enfrentó al reto de resolver la cuestión sobre si los derechos de propiedad intelectual creados por los biobancos pueden gestionarse más abiertamente para garantizar la distribución equitativa del conocimiento y las mejoras de la investigación genética. Se propone fomentar que los biobancos usen licencias más abiertas en sus obras protegidas por derechos de autor, bases de datos e inventos patentados. Para facilitar la transferencia de conocimiento entre biobancos y garantizar que la investigación genética mejore, se realiza una reflexión sobre la aplicación de licencias abiertas. La tesis describe el modelo de intercambio colectivo y apoya la posibilidad de usar derechos de propiedad intelectual de forma no restrictiva.
La tesis también propone el uso del consentimiento informado amplio en las actividades de los biobancos. Un consentimiento informado amplio garantizaría el equilibrio adecuado entre los derechos individuales y el derecho de los biobancos de compartir la información recogida, especialmente, porque existen incentivos para tratar la genética humana como patrimonio común. El consentimiento abierto puede usarse en las actividades del biobanco para garantizar que los tejidos no permanecen sin uso. Este tipo de consentimiento puede asegurar el máximo valor de los tejidos biológicos recogidos. Si las muestras recogidas no están restringidas a un solo uso o a una sola investigación, podemos esperar que otros estudios lleven a cabo investigaciones sobre las mismas muestras y se presente información científica más amplia y relevante.This thesis faced the challenge of answering the question if intellectual property rights that are created by the biobanks can be managed more openly to ensure the equitable distribution of knowledge and improvements of the genetic research. The proposal is made to encourage the biobanks to use more broadly open licenses in their copyrighted works, databases and patented inventions. To ease the transfer of knowledge between biobanks and ensure that the genetic research is improving, the reflection to apply open licenses is made. The thesis describes the open sharing model and supports the possibilities to use IP rights in a non-restricting way. The thesis also proposes to use broad informed consent in the biobanks’ activities. Broad informed consent would ensure the right balance between individual rights and biobanks’ need to share collected information, especially, because there are incentives to treat human genetics as a common good. Open consent can be used in the biobank’s activities to ensure that the tissues are not left unutilised. Such form of consent can assure the maximum value of the collected biological tissues. If collected samples are not restricted to the one-time or one-research use, we can expect that other studies perform research on the same samples and the broader scientific information is presented.
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Argudo, Portal Violeta. « Biomedicina en proceso de elaboración : Un estudio cualitativo sobre los biobancos como infraestructuras para la investigacion biomedica ». Doctoral thesis, Universitat Autònoma de Barcelona, 2021. http://hdl.handle.net/10803/674032.
Texte intégralRésumé :
Durant la segona meitat del segle passat es van estabilitzar algunes tecnologies i maneres de pensar i generar coneixement entorn del que s’ha vingut a denominar biomedicina, la medicina biologicista posterior a la Segona Guerra Mundial. La criopreservació en glicerol, el desenvolupament de maquinària per a la producció de baixes temperatures, l’estandardització de les anàlisis biològiques, la tècnica PCR o la seqüenciació del genoma humà han estat alguns dels esdeveniments que han propiciat l’auge de les ciències “ómicas” i la molecularització de la vida. Els biobancs, un tipus de biorepositori amb mostres i dades associades d’origen humà, que són l’objecte principal d’aquesta tesi, van començar a establir-se formalment a diferents països al final del segle passat i inici del present mil·lenni. S’estableixen així en un moment en el qual la genòmica havia posat sota escrutini la recerca biomolecular i la ciència en general, donant pas a la problematització i formalització del camp de la bioètica. És en aquest context quan a la fi dels anys 90 els biobancs, són presentats com les condicions de possibilitat per a la medicina i recerca biomèdica esdevenidora, per a la producció de coneixement, tractaments i fàrmacs. A diferència d’altres bancs de mostres biològiques d’origen humà que tenen fins terapèutics o reproductius, el que caracteritza als biobancs són els “fins de recerca biomèdica”. Els biobancs són així un tipus de biorepositori que recull, processa, conserva (majoritàriament a baixa temperatura) i distribueixen mostres biològiques d’origen humà i dades associades amb finalitats de recerca biomèdica. L’objectiu general d’aquesta tesi doctoral és analitzar els biobancs en el context de la biomedicina contemporània, un objectiu que em permet explorar de què està feta (parcialment) la biomedicina.
Per a estudiar els biobancs m’he servit dels abordatges analítics, conceptuals i metodològics dels estudis en ciència i tecnologia (STS) i l’antropologia. Es tracta d’una recerca qualitativa (anàlisi documental, treball de camp multisituat i un estudi de cas etnogràfic) on l’abordatge empíric se centra en les perspectives i la quotidianitat del personal que treballa en els biobancs. Al llarg de la tesi he analitzat quina és la posada en escena dels biobancs, tant pel que fa a les polítiques científiques europees en matèria d’infraestructures per a la recerca i la normativa de l’estat espanyol, com per part del personal que treballa en ells. Amb l’estudi dels biobancs indago “problemes antropològics”, els quals tenen a veure amb l’existència humana com a productora de coneixement, intervenció tecnològica i problematitzacions eticopolítiques (Collier and Ong, 2008).
Els biobancs són presentats a les polítiques científiques com a infraestructures imprescindibles per a la recerca biomèdica i les seves projeccions futuristes a les polítiques científiques. Aquesta tesi problematitza aquesta lectura a través del seu estudi qualitatiu i adoptant un abordatge criopolític. Mitjançant l’anàlisi qualitatiu aporto una redefinició densa de què és/fa un biobanc, la qual cosa ens condueix a preguntar-nos què estan deixant de ser i fer, cap a on transiten i amb ells la coproducció d’un coneixement biomèdic particular. En aquesta recerca analitzo com la condició de mediadors converteix als biobancs en infraestructures oscil·lants, articulant maneres de biodisponibilitat complexes entre l’altruisme i l’emprenedoria neoliberal. Per a això, en aquesta tesi proposo un abordatge empíric que s’aproximi a les friccions que sorgeixen de la praxi bioclínica i que indagui com ampliar el principalisme ètic per tal d’alterar la inèrcia del pensament i l’acció eticopolítica. Finalment, la tesi conclou assenyalant que les recerques qualitatives empíriques són imprescindibles per a configurar un abordatge eticopolític que tingui en compte el caràcter relacional i distribuït de la recerca biomèdica.Durante la segunda mitad del siglo pasado se estabilizaron algunas tecnologías y formas de pensar y generar conocimiento en torno a lo que se ha venido a denominar biomedicina, la medicina biologicista posterior a la Segunda Guerra Mundial. La criopreservación en glicerol, el desarrollo de maquinaria para la producción de bajas temperaturas, la estandarización de los análisis biológicos, la técnica PCR o la secuenciación del genoma humano han sido algunos de los acontecimientos que han propiciado el auge de las ciencias ómicas y la molecularización de la vida. Los biobancos, un tipo de biorepositorio con muestras y datos asociados de origen humano, que son el objeto principal de esta tesis, comenzaron a establecerse formalmente a lo largo del globo a finales del siglo pasado comienzo del presente milenio. Se establecen así en un momento en el que la genómica había puesto bajo escrutinio la investigación biomolecular y la ciencia en general, dando paso a la problematización y formalización del campo de la bioética. Es en este contexto, cuando a finales de los años 90, los biobancos son presentados como las condiciones de posibilidad para la medicina e investigación biomédica venidera, para la producción de conocimiento, tratamientos y fármacos. A diferencia de otros bancos de muestras biológicas de origen humano que tienen fines terapéuticos o reproductivos, lo que caracteriza a los biobancos son sus “fines de investigación biomédica”. Los biobancos son así un tipo de biorepositorio que recoge, procesa, conserva (mayoritariamente a baja temperatura) y distribuye muestras biológicas de origen humano y datos asociados con fines de investigación biomédica. El objetivo general de la presente tesis doctoral es analizar los biobancos en el contexto de la biomedicina contemporánea, un objetivo que me permite explorar de qué está hecha (parcialmente) la biomedicina. Para estudiar los biobancos me he servido de los abordajes analíticos, conceptuales y metodológicos de los estudios en ciencia y tecnología (STS) y de la antropología social. Se trata de una investigación cualitativa (análisis documental, trabajo de campo multisituado y un estudio de caso etnográfico) donde el abordaje empírico se centra en las perspectivas y cotidianidad del personal que trabaja en los biobancos. A lo largo de la tesis he analizado cuál es la puesta en escena de los biobancos tanto en las políticas científicas europeas en materia de infraestructuras para la investigación y la normativa del estado español, como por parte del personal que trabaja en ellos. Con el estudio de los biobancos indago “problemas antropológicos”, los cuales tienen que ver con la existencia humana como productora de conocimiento, intervención tecnológica y problematizaciones ético-políticas (Collier and Ong, 2008). Los biobancos son presentados como infraestructuras imprescindibles para la investigación biomédica y sus proyecciones futuristas. Esta tesis complejiza dicha lectura a través de su estudio cualitativo y adoptando un abordaje criopolítico. Mediante el análisis cualitativo aporto una redefinición densa de qué es/hace un biobanco, lo que nos lleva a preguntarnos qué están dejando de ser y hacía dónde transitan y con ellos la coproducción de un conocimiento biomédico particular. Argumento en esta investigación que la condición de mediadores convierte a los biobancos en infraestructuras oscilantes, articulando modos de biodisponibilidad complejos entre altruismo y emprendimiento neoliberal. Para ello, en esta tesis propongo un abordaje empírico que se aproxime a las fricciones que surgen de la praxis bioclínica y que indague cómo ampliar el principialismo ético y disrumpir la inercia del pensamiento y la acción ético-política. Concluyo señalando que las investigaciones cualitativas empíricas son imprescindibles para configurar un abordaje ético-político que tenga en cuenta el carácter relacional y distribuido de la investigación biomédica.
During the second half of the last century, some technologies, ways of thinking, and forms of knowledge production were stabilized around what has come to be called biomedicine, a biologicist medicine of the post-World War II era. Cryopreservation in glycerol, machinery for low-temperature manufacturing, the standardization of biological analyses, the PCR technique, and the sequencing of the human genome are some of the events that have led to the rise of the omics sciences and the molecularization of life. Biobanks, a type of biorepository with samples and associated data of human origin, which are the subject of inquiry of this thesis, began to be formally established around the world at the end of the last century and the beginning of the present millennium, along with the aforementioned events. They were born in a context in which genomics had brought biomolecular research and scientific projects under scrutiny, giving rise to the problematization and formalization of the field of bioethics. In this context, during the late 1990s biobanks started to be presented as the condition of possibility for future biomedical research and medicines, including the production of knowledge, treatments, and drugs. Unlike other banks of biological samples of human origin that have therapeutic or reproductive purposes, what characterizes biobanks are their “biomedical research purposes.” Biobanks are thus a type of biorepository that collects, processes, preserves (mainly at low temperatures), and distributes biological samples of human origin and associated data for biomedical research purposes. Overall, the main objective of this dissertation is to analyze biobanks in the context of contemporary biomedicine, which allows me to explore what biomedicine (partially) consists of. I use the analytical, conceptual, and methodological approaches of science and technology studies and anthropology to study biobanks. This research draws upon qualitative methods (documentary analysis, multi-sited fieldwork, and an ethnographic case study) and an empirical approach that revolves around biobankers’ concerns and daily work. Throughout the thesis, I have analyzed the staging of biobanks in European scientific policies on research infrastructures, Spanish state regulations, and by the staff working in them. This doctoral dissertation is a study about biobanks and the staff working in them. In this approach to biobanks, I investigate “anthropological problems”, which have to do with human existence as a producer of knowledge, technological intervention, and ethico-political problematizations (Collier and Ong, 2008). Biobanks are generally presented as essential infrastructures for biomedical research and its futuristic projections. This thesis complexifies such a reading through its qualitative study and cryopolitical approach. Through qualitative analysis, I provide a grounded redefinition of what a biobank is/does, leading us to consider what they are ceasing to be, what they are transiting into, and the accompanying co-production of particular biomedical knowledge. I argue that as mediators, biobanks are oscillating infrastructures, articulating complex modes of bioavailability between altruism and neoliberal entrepreneurship. To this end, in this thesis, I propose an empirical approach that responds to the frictions arising from bioclinical praxis and asks how to broaden ethical principlism and disrupt the inertia of ethico-political thought and action. I conclude by noting that empirical qualitative inquiries are essential to configure an ethico-political approach that accounts for the relational and distributed character of biomedical research.
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Baptista, Rosanita Ferreira e. « Coleções de material humano para uso em pesquisa : controvérsias e redes na construção da regulamentação de biobancos e biorrepositórios no Brasil ». Faculdade de Filosofia e Ciências Humanas, 2013. http://repositorio.ufba.br/ri/handle/ri/18825.
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As biociências, ao tomarem o corpo humano como objeto de escrutínio e experimentação, mobilizam questões e atores que não são apenas científicos e técnicos, mas também políticos, legais e éticos. A imbricação dessas esferas parece tornar problemáticas as perspectivas que se fundamentam em dualidades, como natureza x cultura, fato x valor. Esse é o caso dos biorrepositórios e biobancos com finalidades de pesquisa, cujas práticas de manusear e colecionar material biológico humano e informações associadas para uso em pesquisas, ao tempo em que gera expectativas para o desenvolvimento da saúde e da medicina, também trazem incertezas e controvérsias sobre a natureza e destino das coleções, bem como sobre as consequências dos experimentos. É um contexto em que as práticas científicas engendram entidades que não se enquadram confortavelmente nas ontologias modernas e, mais especificamente, tornam ambíguas as fronteiras do “humano”, demandando novas regulamentações e ordenações. Assim, sob o referencial da Teoria Ator-Rede, esta tese propõe explorar as controvérsias que tomaram forma nos eventos de construção da regulamentação dos biobancos e biorrepositórios no Brasil, no período de 2009 a 2011, sob condução do Ministério da Saúde (MS) e do Conselho Nacional de Saúde (CNS) e que resultaram na publicação das Diretrizes para Análise Ética de Projetos de Pesquisas que Envolvam Armazenamento de Material Biológico Humano ou Uso de Material Armazenado em Pesquisas (Resolução CNS Nº 441/11) e nas Diretrizes Nacionais para Biorrepositórios e Biobancos com Finalidade de Pesquisa (Portaria do MS nº 2.201/ 11). Dois objetivos principais norteiam a investigação: mapear as controvérsias que envolvem a temática do armazenamento e uso de informações e material biológico humano em pesquisa e apreender a tessitura híbrida que conformaram normas e padrões para estas práticas tecnocientíficas. By adopting the human body as an object of scrutiny and experimentation, the biosciences has mobilized issues and actors who are not only scientific and technical, but also political, legal and ethical. The overlapping of these spheres seems to interfere with prospects that are based on dualities, such as nature vs. culture, fact vs. value. This is the case with regards to biobanks and biorepositories that are intended for research, where the practices of collecting and handling human biological material and associated information for use in research. This also creates expectations for the development of health and medicine, they too bring uncertainties and controversies about the nature and destination of the collections, as well as on the consequences of the experiments. It is a context in which scientific practices create entities that do not fit comfortably in modern ontologies, and more specifically, they make unclear the boundaries of the "human", demanding new regulations and ordinances. Therefore, under the Actor- Network Theory framework, this thesis intends to explore the controversies that took shape in the conception event of the regulation of biobanks and biorrepositórios in Brazil, in the 2009-2011 period, under the guidance of the Ministry of Health (MOH) and the National Health Council (CNS), which resulted in the publication of the Guidelines for ethical analyzing of research projects that involve material storage or utilization of stored materials in prior researches (Ordinance No. 2201) and the Brazilian Resolution on the storage and use of human biological material in research projects (Resolution 441/11). There are two main objectives guiding the research: to map the controversies surrounding the issue of storage and use of information and human biological material in research and to learn the hybrid composition that followed norms and patterns for these techno-scientific practices.
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Castelhano, Marta Guilherme Pimentel. « Development and implementation of a veterinary biobank to support biomedical research : the Cornell Veterinary Biobank ». Master's thesis, Universidade de Lisboa, Faculdade de Medicina Veterinária, 2017. http://hdl.handle.net/10400.5/15641.
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Maira, Alessandra. « Le biobanche di embrioni ». Thesis, Universita' degli Studi di Catania, 2011. http://hdl.handle.net/10761/377.
Texte intégralRésumé :
Con la presente trattazione ci si e' posto l' obbiettivo di affrontare la questione relativa alla conservazione degli embrioni prodotti tramite le tecniche di fecondazione artificiale e non immediatamente impiantati. In assenza di specifiche disposizioni normative in grado di regolamentare tale materia, si e' cercato di individuare quali possano essere gli obblighi giuridici ed etici che incombono su un centro che si occupa della conservazione degli embrioni residuali, anche alla luce degli interventi comunitari in materia di biobanche, della legge 40/2004 e delle linee guida adottate dal Ministero della Salute in materia di accesso alle tecniche di procreazione medicalmente assistita.
La questione non poteva essere trattata in maniera totalmente avulsa dal contesto piu' ampio che riguarda in generale la conservazione del materiale biologico, di cui si occupano le diverse biobanche, ormai diffuse ampiamente tanto a livello internazionale quanto in quello nazionale, le quali hanno iniziato ad operare in assenza di un preciso quadro normativo di riferimento, ricorrendo a forme di autoorganizzazione, mediante le quali ogni centro ha stabilito una propria governance, dettando i propri canoni, i propri metodi, i propri obiettivi.
I successivi interventi comunitari in materia non sono stati in grado di dar luogo ad una disciplina precisa, chiara e coerente per quel che riguarda la conservazione del materiale biologico, lasciando dei grossi spazi di indeterminatezza legislativa, vuoi per l'eccessivo tecnicismo da un lato, vuoi per l'ambiguita' lessicale dall' altro.
Una volta analizzate le principali questioni che riguardano le biobanche in generale, ci si e' proposti di guardare alla tematica della conservazione degli embrioni in particolare.
In questo campo infatti si aggravano in maniera esponenziale, tanto le questioni etiche, quanto la confusione normativa, data dall'assenza di una precisa regolamentazione in materia.
Il problema della conservazione degli embrioni nasce successivamente allo sviluppo delle tecniche di congelamento che hanno permesso di conservare gli embrioni prodotti in eccedenza ed e' rimasto aperto anche dopo l'entrata in vigore della legge 40/04 che, nonostante l'apparente rigore, non si occupa della condizione degli embrioni sovranumerai crioconservati.
Una volta individuate le disposizioni normative, comunitarie ed interne, da applicare anche alle biobanche di embrioni, ed analizzate le varie questioni etiche sollevate dalla pratica della crioconservazione di embrioni, si e' tentato di ricostruire una possibile disciplina giuridica in grado di regolamentare in maniera piu' precisa l'attivita' di tali tecno-strutture Si e' tentato, infatti, di ricostruire, a partire dai dati normativi esistenti e ricorrendo poi a tradizionali schemi giuridici, una disciplina piu' precisa che possa regolamentare il rapporto che si svolge tra un centro di PMA che si occupa della produzione e conservazione di embrioni e coppia che accede alle tecniche di fecondazione assistita e a cui fanno capo gli embrioni conservati, individuando gli obblighi che assume la biobanca e le susseguenti responsabilita' che possono derivare da un inadempimento. L'obiettivo fondamentale e', quindi, quello della responsabilizzazione dei centri di conservazione degli embrioni attraverso il ricorso agli strumenti giuridici a nostra disposizione.
L'esigenza di fondare spazi di responsabilita' giuridica si avverte fortemente in questo campo in quanto si scorge la sacralita' del soggetto coinvolto, l'embrione, che necessita di una tutela estremamente forte in quanto entita' che racchiude in se tutti i caratteri dell'essenza umana ed e' persona dal momento iniziale del suo ciclo vitale.
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Hirschman, Sarah (Sarah Margaret). « Biobank for America ». Thesis, Massachusetts Institute of Technology, 2011. http://hdl.handle.net/1721.1/63051.
Texte intégralRésumé :
Thesis (M. Arch.)--Massachusetts Institute of Technology, Dept. of Architecture, 2011.Cataloged from PDF version of thesis.
Includes bibliographical references (p. 116-120).
More than 300 million biospecimens - blood samples, saliva swabs, excised tumors - are housed in different collections all over the country right now. Meanwhile, biometric data is constantly being compiled by sophisticated security systems, by lifestyle products, and even by ordinary ATMs. Because private companies, hospitals, for-profit testing facilities, and security companies 'own' the information they collect, it can't work for you. Billions of dollars in grants are spent each year on focused medical studies seeking information that is most likely already available, but unobtainable. The availability of biometric information to researchers able to draw real statistical conclusions from it is impeded both by a shaky notion of individuals' privacy and the proprietary funding structure by which much of the information has been gathered. The data is out there - it's not a question of wanting to share personal data or not. Measures like the Genetic Information Nondiscrimination Act treat a symptom of the end of privacy, but by no means secure it. The only productive embrace of this national mine of information is to make it fully transparent, to make it available to the public and researchers alike, to nationally acknowledge the end of an antiquated notion of privacy, and to stave off the flow of research dollars into patented pharmaceuticals. The Biobank for America does just that by making transparent the collection and storage of biometric information on a national scale and finally collating it into a comprehensive, searchable archive.
by Sarah Hirschman.
M.Arch.
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Chobisara, Tarmphong. « Partnership and biobank governance ». Thesis, University of Edinburgh, 2017. http://hdl.handle.net/1842/23440.
Texte intégralRésumé :
The forward march of biobanking creates the need for an alternative approach to biobank governance. Biobanking encourages medical advancement by making the conduct of health-related research more efficient, by minimising physical harms to participants, and by facilitating personalised medicine and greater understandings of disease. Nonetheless, its characteristics that distinguish it from general health-related research often give rise to many ethical and social issues. For example, multiple and unexpected uses of biobank resources can render conventional informed consent inadequate for safeguarding participants and maintaining public trust and confidence. Also, because the size of a biobank cohort is normally large, biobanking usually requires considerable management resources and this can mean that biobanks can likely be financially dependent upon for-profit entities. This dependency can cause concern among participants and publics about commercial exploitation. These issues suggest that a new approach to biobank governance is required to address them. Indeed, their complexity and the sheer longevity of biobanking itself also suggest that it is relatively feasible and coherent to address them by focusing on a relationship between participants and biobankers. This involves many aspects of interaction and reflects an element of continuity, which is crucial to biobanking success, as opposed to one-off measures. Consequently, with the aim of addressing issues that arise from biobanking, this thesis offers an analysis of the participant-biobanker relationship that can deal with these issues. Such a relationship constitutes an authentic research relationship in biobanking (“ARR”). Based on this premise, the main research question of my thesis is to ask: What form of research relationship is appropriate for effective and ethical biobanking practices? Three sub-questions are raised to solve this top-level research question. They start with a normative question of why the ARR proposed in this thesis is desirable for biobanking. The next sub-question asks what this ARR should look like from a conceptual perspective. For a practical respect on my proposals, the last sub-question concerns the ways in which the ARR can be fostered in practice. To address these research questions, my thesis first establishes the main characteristics of the proposed ARR as the fundamental notion thereof. These main characteristics are used to answer the first sub-question. For the second sub-question, the thesis suggests that the ARR should be based on the concept of partnership, as opposed to solidarity, mainly because partnership can exhibit the main characteristics of the ARR – as argued – and can also be prescribed in a governance manner. The thesis then uses partnership as a basis for proposing the key features of the ARR, which are deemed to be a conceptual framework for the ARR. To answer the last sub-question, the thesis uses this conceptual framework to propose a partnership model for biobank governance that can be used to develop the ARR in practice. My original contribution is to propose a novel approach to an ARR, and this ARR is based on the concept of partnership. In other words, my thesis argues that the pursuit of the ARR, which looks like a partnership relationship, is an important element of biobanking success. In this respect, my thesis is about a sociologically informed role for partnership in biobank governance. It also provides a nuanced epistemological grounding for a participant-biobanker relationship in both conceptual and practical ways. From a philosophical perspective, my thesis proposes an ethical framework for biobank governance that perceives partnership as a virtuous trait for biobankers and provides rules for acquiring this trait through biobanking practices. Notably, it is argued that this partnership is not – nor need it be – the legal paradigm of partnership, which fundamentally refers to for-profit business association. While law might have a role to play in facilitating the development of the ARR, it cannot prescribe the ARR nor should it attempt to do so.
Livres sur le sujet "Biobanca"
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Lenk, Christian, Judit Sándor et Bert Gordijn, dir. Biobanks and Tissue Research. Dordrecht : Springer Netherlands, 2011. http://dx.doi.org/10.1007/978-94-007-1673-5.
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1958-, Gottweis Herbert, et Petersen, Alan R., Ph. D., dir. Biobanks : Governance in comparative perspective. Abingdon, Oxon : Routledge, 2008.
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Robbio, Antonella De. Biobanks : Patents or open science ? Oxford : Woodhead Publishing, 2013.
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Gert, Almind, dir. Health science information banks : Biobanks. [Denmark] : Danish Medical Research Council, 1996.
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1958-, Gottweis Herbert, et Petersen, Alan R., Ph. D., dir. Biobanks : Governance in comparative perspective. Abingdon, Oxon : Routledge, 2008.
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Matera-Witkiewicz, Agnieszka, Joanna Gleńska-Olender, Izabela Uhrynowska-Tyszkiewicz, Małgorzata Witoń, Karolina Zagórska, Katarzyna Ferdyn, Michał Laskowski et al. Manual of Biobank Quality Management. Cham : Springer International Publishing, 2023. http://dx.doi.org/10.1007/978-3-031-12559-1.
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1975-, Nishi Yoshito, dir. Coca : Un biobanco : investigación científica sobre alimentación, curación y regeneración. La Paz, Bolivia : t'ika & teko, 2012.
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Chen, Zhengming, dir. Population Biobank Studies : A Practical Guide. Singapore : Springer Singapore, 2020. http://dx.doi.org/10.1007/978-981-15-7666-9.
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Pascuzzi, Giovanni, Umberto Izzo et Matteo Macilotti, dir. Comparative Issues in the Governance of Research Biobanks. Berlin, Heidelberg : Springer Berlin Heidelberg, 2013. http://dx.doi.org/10.1007/978-3-642-33116-9.
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Dierickx, Kris. New challenges for biobanks : Ethics, law, and governance. Antwerp : Intersentia, 2009.
Trouver le texte intégralChapitres de livres sur le sujet "Biobanca"
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Tzortzatou, Olga, et Anastasia Siapka. « Mapping the Biobank Landscape in Greece ». Dans GDPR and Biobanking, 291–307. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_16.
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AbstractThe biobank landscape in Greece is mainly defined by tissue and data collections created in the course of clinical practice whose samples are subsequently repurposed for research. Given that there is no specific Greek biobank law, these collections have been so far governed through provisions drawn from the domestic civil and constitutional legal armamentarium concerning (biomedical) research as well as soft and hard EU and international laws. This chapter provides an empirical overview of the biobank landscape in Greece, describing existing biobanks and tissue collections potentially used for research in a non-exhaustive manner. Next, it explores how the Greek Law on the Protection of Personal Data envisages individuals’ rights in the context of biobanking research and how these rights are weighted against the public interest. Finally, it evaluates the potential impact of the GDPR on biobanking in Greece.
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Befring, Anne Kjersti. « Norwegian Biobanks : Increased Complexity with GDPR and National Law ». Dans GDPR and Biobanking, 323–44. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_18.
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AbstractNorway is generally regarded as having good opportunities for biobank research because of Biobank Norway—its national infrastructure of biobanks—which represents one of the world’s largest existing resources within biobanking. It covers both consented population-based and disease-specific clinical biobanks. However, the regulatory framework in Norway for biobanking is fragmented, which makes navigating the legal landscape challenging.The Personal Data Act (PDA) implements the General Data Protection Regulation (GDPR), and a few adjustments were made in the national health legislation in order to bring it into line with the GDPR. The Health Research Act (HRA) enables the use of biobanking and personal data in research with and without the consent of individuals. There are some disagreements about the changes brought about by the GDPR when it comes to research on biological material that includes personal data. When implementing GDPR Article 89, it was emphasised that the Data Protection Officer (DPO) has an important role even though the research ethics committee has allowed the use of data (the regional committee for medical and health research ethics (REC)). This has created conflicts. This article highlights key issues and ambiguities related to the GDPR and national legislation, and the relationship between the two.
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Staunton, Ciara. « Individual Rights in Biobank Research Under the GDPR ». Dans GDPR and Biobanking, 91–104. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_6.
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AbstractThe coming into force of the General Data Protection Regulation (GDPR) on 25 May 2018 has brought about considerable changes in how data may collected, stored and used. Biobanks, which require the collection, use and re-use of large quantities of biological samples and data, will be affected by the proposed changes. In seeking to require ‘data protection by design’, the GDPR provides data subjects with certain individual rights. They are, the right to be informed, the right of access, the right to rectification, the right to erasure, the right to restrict processing, the right to data portability, the right to object and rights in relation to automated decision making and profiling.This chapter will consider each of these individual rights in turn and discuss the impact on biobank research. In particular, it will discuss the challenges that are now facing biobanks in upholding the individual rights, the limits of these rights in light of the technical realities of biobanks, and the potential impact that they may have on the collection, sharing, use and re-use of biological data and material.
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Lalova, Teodora, Anastassia Negrouk, Laurent Dollé, Sofie Bekaert, Annelies Debucquoy, Jean-Jacques Derèze, Peggy Valcke, Els J. Kindt et Isabelle Huys. « An Overview of Belgian Legislation Applicable to Biobank Research and Its Interplay with Data Protection Rules ». Dans GDPR and Biobanking, 187–213. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_10.
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AbstractThis contribution aims to present in a clear and concise manner the intricate legal framework for biobank research in Belgium. In Part 1, we describe the Belgian biobank infrastructure, with a focus on the concept of biobank. In Part 2, we provide an overview of the applicable legal framework, namely the Act of 19 December 2008 on Human Body Material (HBM), and its amendments. Attention is given to an essential piece of self-regulation, namely the Compendium on biobanks issued by the Federal Agency on Medicine Products and Health (FAMPH). Furthermore, we delineate the interplay with relevant data protection rules. Part 3 is dedicated to the main research oversight bodies in the field of biobanking. In Part 4, we provides several examples of the ‘law in context’. In particular, we discuss issues pertaining to presumed consent, processing of personal data associated with HBM, and information provided to the donor of HBM. Finally, Part 5 and 6 addresses the impact of the EU General Data Protection Regulation (GDPR), suggests lines for further research, and outline the future possibilities for biobanking in Belgium.
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Nordberg, Ana. « Biobank and Biomedical Research : Responsibilities of Controllers and Processors Under the EU General Data Protection Regulation ». Dans GDPR and Biobanking, 61–89. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_5.
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AbstractBiobanks are essential infrastructures in current health and biomedical research. Advanced scientific research increasingly relies on processing and correlating large amounts of genetic, clinical and behavioural data. These data are particularly sensitive in nature and the risk of privacy invasion and misuse is high. The EU General Data Protection Regulation (GDPR) developed and increased harmonisation, resulting in a framework in which the specific duties and obligations of entities processing personal data—controllers and processors—were defined. Biobanks, in the exercise of their functions, assume the role of controllers and/or processors and as such need to comply with a number of complex rules. This chapter analyses these rules in the light of Article 89 GDPR, which creates safeguards and derogations relating to ‘processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes’. It identifies key compliance challenges faced by biobanks as data controllers and processors, such as determining whether the GDPR is applicable and its intersection with other regulations; when a biobank should be considered controller and processor; and what are the main duties of biobanks as data controllers and processors and options for compliance.
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Stenbeck, Magnus, Sonja Eaker Fält et Jane Reichel. « Swedish Law on Personal Data in Biobank Research : Permissible But Complex ». Dans GDPR and Biobanking, 379–94. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_21.
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AbstractThis chapter describes the regulatory and organisational infrastructure of biobank research in Sweden, and how the introduction of the GDPR affects the possibilities to use biobank material in future research. The Swedish legislator has chosen a rather minimalistic approach in relation to the research exception in Article 89 GDPR and has only enacted limited general exceptions to the data protection rules. This may be partly explained by the comprehensive right to public access to official documents which gives researchers vast access to information held in registries, albeit conditioned on abiding by secrecy and confidentiality rules. The Swedish legislation implementing the GDPR includes a general exception from the data protection rules in relation to the right to access to official documents, which researchers also benefit from. However, confidentiality rules for different categories of information differ between sectors, which hinders an effective use of the registries in research. The regulatory regime for using biobank and registry data in Sweden thus involves both data protection and secrecy rules, which makes the legal landscape permissible but complex. The operationalisation of the research exception in Article 89 GDPR is analysed against this background. Special attention is given to the possibility to link personal information derived from biobanks with personal information from other data sources, including large national population based statistical registries as well as information from national clinical registers.
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Duguet, Anne-Marie, et Jean Herveg. « Safeguards and Derogations Relating to Processing for Scientific Purposes : Article 89 Analysis for Biobank Research ». Dans GDPR and Biobanking, 105–20. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_7.
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AbstractWhen complying with appropriate safeguards, the processing of personal data for scientific research under the GDPR benefits from a special regime which is of interest for biobank research. On the one hand, under this condition, the further processing of personal data will not be incompatible with the initial purposes for which the data were originally collected and processed and it allows for retaining data for longer periods of time for scientific research. Complying with this condition is a condition to lift the prohibition to process special categories of personal data in the context of scientific research. On the other hand, complying with this condition makes it possible to derogate to some extent to several data subjects’ rights such as the right of access, the right to rectification, the right to the restriction of processing and the right to object to the processing.Possible safeguards range from specific procedures to support the exercise of data subjects’ rights to the use of anonymous data or (where necessary) of pseudonymised data, the appointment of a data protection officer, enforcing a procedure to ensure a feedback to data subjects on the results of the research, requiring specific professional accreditations, creating a specific supervisory body for the biobank research, or the creation of a specific Code of conduct for biobank research activities.This double regime under the GDPR is finally compared with the 2009 OECD Guidelines in biobanks and genetic research databases.
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Hallinan, Dara. « Biobank Oversight and Sanctions Under the General Data Protection Regulation ». Dans GDPR and Biobanking, 121–44. Cham : Springer International Publishing, 2021. http://dx.doi.org/10.1007/978-3-030-49388-2_8.
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AbstractThis contribution offers an insight into the function and problems of the oversight and sanctions mechanisms outlined in the General Data Protection Regulation as they relate to the biobanking context. These mechanisms might be considered as meta-mechanisms—mechanisms relating to, but not consisting of, substantive legal principles—functioning in tandem to ensure biobank compliance with data protection principles. Each of the mechanisms outlines, on paper at least, comprehensive and impressive compliance architecture—both expanding on their capacity in relation to Directive 95/46. Accordingly, each mechanism looks likely to have a significant and lasting impact on biobanks and biobanking. Despite this comprehensiveness, however, the mechanisms are not immune from critique. Problems appear regarding the standard of protection provided for research subject rights, regarding the disproportionate impact on legitimate interests tied up with the biobanking process—particularly genomic research interests—and regarding their practical implementability in biobanking.
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Nahler, Gerhard. « biobank ». Dans Dictionary of Pharmaceutical Medicine, 15. Vienna : Springer Vienna, 2009. http://dx.doi.org/10.1007/978-3-211-89836-9_119.
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Kozlakidis, Zisis. « Biobanks and Biobank-Based Artificial Intelligence (AI) Implementation Through an International Lens ». Dans Artificial Intelligence and Machine Learning for Digital Pathology, 195–203. Cham : Springer International Publishing, 2020. http://dx.doi.org/10.1007/978-3-030-50402-1_12.
Texte intégralActes de conférences sur le sujet "Biobanca"
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Seebode, Christian, Matthias Ort, Peter Hufnagl et Christian R. A. Regenbrecht. « Next generation biobanks ». Dans 2015 IEEE International Conference on Big Data (Big Data). IEEE, 2015. http://dx.doi.org/10.1109/bigdata.2015.7363896.
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Kimura, Leonardo T., Ewerton R. Andrade, Tereza C. Carvalho et Marcos A. Simplício Junior. « Amazon Biobank - A community-based genetic database ». Dans Anais Estendidos do Simpósio Brasileiro de Segurança da Informação e de Sistemas Computacionais. Sociedade Brasileira de Computação - SBC, 2021. http://dx.doi.org/10.5753/sbseg_estendido.2021.17342.
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In regions like the Amazon Rainforest, there is much unexplored biodiversity data that could potentially be used to promote innovative biotechnology developments. Building a biobank with such genetic data is, however, a challenge. One reason is that existing repositories (e.g., NCBI) lack clear incentives for collaboration. Aiming to tackle this issue, and promote a biodiversity-based economy in the Amazon region, in this work we present a prototype for the Amazon Biobank, a community-based genetic database. Leveraging blockchain, smart contracts, and peer-to-peer technologies, we build a collaborative and highly scalable repository. It also enables monetary incentives for users who insert, store, process, validate and share DNA data.
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Kimura, Leonardo T., Ewerton R. Andrade, Tereza C. Carvalho et Marcos A. Simplício Junior. « Amazon Biobank - A community-based genetic database ». Dans Anais Estendidos do Simpósio Brasileiro de Segurança da Informação e de Sistemas Computacionais. Sociedade Brasileira de Computação - SBC, 2021. http://dx.doi.org/10.5753/sbseg_estendido.2021.17342.
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In regions like the Amazon Rainforest, there is much unexplored biodiversity data that could potentially be used to promote innovative biotechnology developments. Building a biobank with such genetic data is, however, a challenge. One reason is that existing repositories (e.g., NCBI) lack clear incentives for collaboration. Aiming to tackle this issue, and promote a biodiversity-based economy in the Amazon region, in this work we present a prototype for the Amazon Biobank, a community-based genetic database. Leveraging blockchain, smart contracts, and peer-to-peer technologies, we build a collaborative and highly scalable repository. It also enables monetary incentives for users who insert, store, process, validate and share DNA data.
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Hyysalo, Jarkko, Anja Keskinarkaus, Gavin Harper et Jaakko Sauvola. « Architecture Enabling Service-oriented Digital Biobanks ». Dans Hawaii International Conference on System Sciences. Hawaii International Conference on System Sciences, 2017. http://dx.doi.org/10.24251/hicss.2017.420.
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Afifi, Nahla. « Qatar Population Biobank : Cohort Profile ». Dans Congenital Dystrophies - Neuromuscular Disorders Precision Medicine : Genomics to Care and Cure. Hamad bin Khalifa University Press (HBKU Press), 2020. http://dx.doi.org/10.5339/qproc.2020.nmd.21.
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Švandere, Alise, et Ilze Mileiko. « Pētniecības biobanku izpētes rezultātu atgriešana : donoru skatījums ». Dans LU Studentu zinātniskā konference "Homo et". LU Akadēmiskais apgāds, 2020. http://dx.doi.org/10.22364/lu.szk.1.rk.02.
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Newman, Lee S., Lisa A. Maier, John R. Balmes, Philip I. Harber, Milton Rossman, Paul Scanlon, Donna Cragle et Bonnie Richter. « Beryllium BioBank And Opportunities For Research ». Dans American Thoracic Society 2012 International Conference, May 18-23, 2012 • San Francisco, California. American Thoracic Society, 2012. http://dx.doi.org/10.1164/ajrccm-conference.2012.185.1_meetingabstracts.a2314.
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Casbas-Hernandez, Patricia, Idhaliz Flores, Edward Seijo, Domenico Coppola, Steve Eschrich, Rodrigo Carvajal-Pelaez, Sonia Abac, Dagmar Correa, Edna Gordian et Teresita Munoz-Antonia. « Abstract 1787A : Puerto Rico BioBank : The first cancer tissue biobank at a US Hispanic-serving institution ». Dans Proceedings : AACR 107th Annual Meeting 2016 ; April 16-20, 2016 ; New Orleans, LA. American Association for Cancer Research, 2016. http://dx.doi.org/10.1158/1538-7445.am2016-1787a.
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Zarabzadeh, Atieh, Farzad Hayati, R. William G. Watson, Geoff Bradley et Jane Grimson. « A sample identification and tracking system for biobanks ». Dans 2009 22nd IEEE International Symposium on Computer-Based Medical Systems (CBMS). IEEE, 2009. http://dx.doi.org/10.1109/cbms.2009.5255276.
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Ritchie, Marylyn D., Jason H. Moore et Ju Han Kim. « Translational Bioinformatics : Biobanks in the Precision Medicine Era ». Dans Pacific Symposium on Biocomputing 2020. WORLD SCIENTIFIC, 2019. http://dx.doi.org/10.1142/9789811215636_0067.
Texte intégralRapports d'organisations sur le sujet "Biobanca"
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Hospital de Clínicas de Porto Alegre, Grupo de Pesquisa em Pós-Graduação do. Biobanco Covid-19. Hospital de Clínicas de Porto Alegre, 2020. http://dx.doi.org/10.22491/hcpa-biobanco.
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D.H. Kaye. Bioethical Biobanks : Three Concerns in Designing and Using Law Enforcement DNA Identification Databases. Office of Scientific and Technical Information (OSTI), octobre 2006. http://dx.doi.org/10.2172/893638.
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Emotional abuse during childhood is linked with differences in brain structure. ACAMH, décembre 2020. http://dx.doi.org/10.13056/acamh.14335.
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Delia Gheorghe and colleagues at the University of Oxford have harnessed data from the UK Biobank to delineate the relationship between adverse experiences and brain structure. The researchers accessed brain imaging data together with retrospective reports of childhood adversity and adulthood partner abuse from more than 6,000 adults (mean age, 62.1 years).