The research activities will deal with the ethical and legal issues concerning the collection, the processing, the storage of the genetic and other kinds of data arising from the experimental activities, under the European Union (with reference with the European Charter of the European Union and the EU legislation and praxis), Members States and International perspective (especially taking into account the sources of the European Council, like as the Convention on Human Rights and Biomedicine and its Additional Protocols like as that one concerning Biomedical Research, and the Protocol Genetic Testing for Health Purposes). Indeed, the research in the genetic fields faces with ethical and legal problems, which have to be regulated under multilevel legal sources, praxis and interpretations. Generally speaking, the bioethics is a matter characterised by an ideological/political normative complexity and by the different aims. Furthermore, the ethical problems concerning the genetic research are very specific, due to the particular features by genetic information and the links and correlations with other kinds of personal data which are able to treat the privacy and other fundamental rights. This book is related to this phenomenon, also thanking into consideration information for genetic resources for research purposes, not only human data. In this sense, the contributions presented in this volume address some of the main problems and challenges faced by the specific legal and ethical problems of the genomic research, which are not easy to be solved under the principles and rules established at the different levels.
Genetic Information and Individual Rights
Valentina Colcelli
2018
Abstract
The research activities will deal with the ethical and legal issues concerning the collection, the processing, the storage of the genetic and other kinds of data arising from the experimental activities, under the European Union (with reference with the European Charter of the European Union and the EU legislation and praxis), Members States and International perspective (especially taking into account the sources of the European Council, like as the Convention on Human Rights and Biomedicine and its Additional Protocols like as that one concerning Biomedical Research, and the Protocol Genetic Testing for Health Purposes). Indeed, the research in the genetic fields faces with ethical and legal problems, which have to be regulated under multilevel legal sources, praxis and interpretations. Generally speaking, the bioethics is a matter characterised by an ideological/political normative complexity and by the different aims. Furthermore, the ethical problems concerning the genetic research are very specific, due to the particular features by genetic information and the links and correlations with other kinds of personal data which are able to treat the privacy and other fundamental rights. This book is related to this phenomenon, also thanking into consideration information for genetic resources for research purposes, not only human data. In this sense, the contributions presented in this volume address some of the main problems and challenges faced by the specific legal and ethical problems of the genomic research, which are not easy to be solved under the principles and rules established at the different levels.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.