The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures

Facing the upcoming application possibilities of genomic sequencing in human health research, to\ndetermine the appropriate ethical scope of genetic counselling for research participants becomes a\nmost important challenge. In this thesis, an informed consent model for the disclosure of incidental\n...

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Detalles Bibliográficos
Autor principal: Holzer, Felicitas Sofia
Otros Autores: Mertelsmann, Roland
Formato: Tesis de maestría acceptedVersion
Lenguaje:Inglés
Publicado: Facultad de Farmacia y Bioquímica 2015
Materias:
Bioética
Investigación clínica
Research ethics
Counselling
Ciencia de la vida
Acceso en línea:http://repositoriouba.sisbi.uba.ar/gsdl/cgi-bin/library.cgi?a=d&c=afamaster&cl=CL1&d=HWA_833
http://repositoriouba.sisbi.uba.ar/gsdl/collect/afamaster/index/assoc/HWA_833.dir/833.PDF
Aporte de:
Repositorio Digital de la Universidad de Buenos Aires (UBA) de Universidad de Buenos Aires
id I28-R145-HWA_833
record_format dspace
institution Universidad de Buenos Aires
institution_str I-28
repository_str R-145
collection Repositorio Digital de la Universidad de Buenos Aires (UBA)
language Inglés
orig_language_str_mv eng
topic Bioética
Investigación clínica
Research ethics
Counselling
Ciencia de la vida
spellingShingle Bioética
Investigación clínica
Research ethics
Counselling
Ciencia de la vida
Holzer, Felicitas Sofia
The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
topic_facet Bioética
Investigación clínica
Research ethics
Counselling
Ciencia de la vida
description Facing the upcoming application possibilities of genomic sequencing in human health research, to\ndetermine the appropriate ethical scope of genetic counselling for research participants becomes a\nmost important challenge. In this thesis, an informed consent model for the disclosure of incidental\nfindings in research using whole genome sequencing or whole exome sequencing will be presented.\nThe design of an informed consent model is always based on a general informed consent theory.\nThus, informed consent models can be defined as application of an ideal informed consent theory,\ncontaining general ethical principles, to a particular context.\nThe aim of the thesis is to design and defend an inform model that determines the appropriate ethical\nscope of genetic counselling process for the disclosure of incidental findings ?which I call the\niterative feedback model due to the continuous informed consent process for the disclosure of incidental\nfindings between counsellor and individual research participant. For this purpose, informed\nconsent theories will be analysed and adapted to the case of human health research using whole genome/\nexome sequencing. Furthermore, relevant values of research ethics and characteristics of genomic\ndata will be taken into consideration. The iterative model of informed consent is based on the\ntraditional and on the dynamic consent models to ensure understanding and autonomous choice by\nresearch subjects.
author2 Mertelsmann, Roland
author_facet Mertelsmann, Roland
Holzer, Felicitas Sofia
format Tesis de maestría
Tesis de maestría
acceptedVersion
author Holzer, Felicitas Sofia
author_sort Holzer, Felicitas Sofia
title The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
title_short The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
title_full The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
title_fullStr The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
title_full_unstemmed The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures
title_sort iterative informed consent model for the feedback of incidental finding in human health research using wgs procedures
publisher Facultad de Farmacia y Bioquímica
publishDate 2015
url http://repositoriouba.sisbi.uba.ar/gsdl/cgi-bin/library.cgi?a=d&c=afamaster&cl=CL1&d=HWA_833
http://repositoriouba.sisbi.uba.ar/gsdl/collect/afamaster/index/assoc/HWA_833.dir/833.PDF
work_keys_str_mv AT holzerfelicitassofia theiterativeinformedconsentmodelforthefeedbackofincidentalfindinginhumanhealthresearchusingwgsprocedures
AT holzerfelicitassofia elmodeloiterativodeconsentimientoinformadoparahallazgosincidentalesenlainvestigacionclinicaconsecuenciaciongenomicacompleta
AT holzerfelicitassofia iterativeinformedconsentmodelforthefeedbackofincidentalfindinginhumanhealthresearchusingwgsprocedures
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spelling I28-R145-HWA_8332019-09-27 Facing the upcoming application possibilities of genomic sequencing in human health research, to\ndetermine the appropriate ethical scope of genetic counselling for research participants becomes a\nmost important challenge. In this thesis, an informed consent model for the disclosure of incidental\nfindings in research using whole genome sequencing or whole exome sequencing will be presented.\nThe design of an informed consent model is always based on a general informed consent theory.\nThus, informed consent models can be defined as application of an ideal informed consent theory,\ncontaining general ethical principles, to a particular context.\nThe aim of the thesis is to design and defend an inform model that determines the appropriate ethical\nscope of genetic counselling process for the disclosure of incidental findings ?which I call the\niterative feedback model due to the continuous informed consent process for the disclosure of incidental\nfindings between counsellor and individual research participant. For this purpose, informed\nconsent theories will be analysed and adapted to the case of human health research using whole genome/\nexome sequencing. Furthermore, relevant values of research ethics and characteristics of genomic\ndata will be taken into consideration. The iterative model of informed consent is based on the\ntraditional and on the dynamic consent models to ensure understanding and autonomous choice by\nresearch subjects. Fil: Holzer, Felicitas Sofia. Universidad de Buenos Aires. Facultad de Farmacia y Bioquímica; Argentina Mertelsmann, Roland Mollerach, Marta Facultad de Farmacia y Bioquímica Mastroleo, Ignacio Holzer, Felicitas Sofia 2015-06-01 Frente a las posibilidades inmediatas de aplicación de la secuenciación genómica en la investigación\nen salud humana, determinar el alcance ético apropiado del asesoramiento genético (?counselling?)\nde participantes se convierte en una cuestión de la mayor importancia. En esta tesis, se presentará\nun modelo de consentimiento informado para la divulgación de los hallazgos incidentales en\nla investigación que utiliza procedimientos de secuenciación del genoma completo o secuenciación\nde exoma completo.\nEl diseño de un modelo de consentimiento informado se basa en la teoría general del proceso de\nconsentimiento informado. Por lo tanto, los modelos de consentimiento informado pueden definirse\ncomo una aplicación de la teoría de consentimiento informado ideal, que incorpora principios éticos\ngenerales, en un contexto particular.\nEl objetivo de la tesis es diseñar y defender un modelo de informe que determina el alcance ético\napropiado del proceso de asesoramiento genético para la comunicación de hallazgos incidentales al\ncual llamo ?modelo iterativo? para resaltar la continuidad del proceso de consentimiento informado entre el consejero y el participante de la investigación. Para ello, las teorías de consentimiento in-formado serán analizadas y adaptadas al caso de la investigación en salud humana con procedi-mientos de secuenciación de genoma/exoma completo. Además, valores relevantes a la ética de la investigación y características de los datos genómicos serán tomados en consideración. El modelo iterativo de consentimiento informado se basa en los modelos de consentimiento informado tradi-cional y dinámico, para asegurar la comprensión y la elección autónoma por parte de los sujetos de la investigación. application/pdf Gelpi, Ricardo Kauffman, Marcelo Borner, Chistoph Bioética Investigación clínica Research ethics Counselling eng Universidad de Buenos Aires. Facultad de Farmacia y Bioquímica info:eu-repo/semantics/openAccess http://creativecommons.org/licenses/by-nc-nd/2.5/ar/ Ciencia de la vida The iterative informed consent model for the feedback of incidental finding in human health research using WGS procedures El modelo iterativo de consentimiento informado para hallazgos incidentales en la investigación clínica con secuenciación genómica completa info:eu-repo/semantics/masterThesis info:ar-repo/semantics/tesis de maestría info:eu-repo/semantics/acceptedVersion http://repositoriouba.sisbi.uba.ar/gsdl/cgi-bin/library.cgi?a=d&c=afamaster&cl=CL1&d=HWA_833 http://repositoriouba.sisbi.uba.ar/gsdl/collect/afamaster/index/assoc/HWA_833.dir/833.PDF

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