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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| Formato: | Tesis de maestría acceptedVersion |
| Lenguaje: | Inglés |
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Facultad de Farmacia y Bioquímica
2015
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| 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: |
| Sumario: | 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. |
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