Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

dialnet-ar-18-ART0001232839

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dialnet-ar-18-ART00012328392017-11-29Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal goodChrist, HedleyGeneticgenomicand proteomic databasesGlobal governanceRight to privacySocietal goodEver since the mapping of the human genome, the amount of human genetic data now being collected has been called a tidal wave of data. Such data is being stored with the principal aim of using such data for research, primarily in genetic diseases, but not exclusively. Such databases become more powerful when they are linked, because of the increased number of DNA sequences that can be searched. However, this provides for significant problems of management and governance of these databases, not least because they hold genetic information on identifiable individuals and therefore, there has to be control over access to these databases. But, beyond such issues lie a number of legal problems which relate to patients’ rights and patients’ duties to society and medical research; questions of ownership, not only of the databases themselves, but also the genetic information stored in such databases, particularly with the issues related to intellectual property rights. This brief paper examines the need for governance of such databases, principally through soft law techniques of international regime analysis.2017text (article)application/pdfhttps://dialnet.unirioja.es/servlet/oaiart?codigo=6178803(Revista) ISSN 2531-1352Rights and Science: R&S, ISSN 2531-1352, 2017, pags. 15-22engLICENCIA DE USO: Los documentos a texto completo incluidos en Dialnet son de acceso libre y propiedad de sus autores y/o editores. Por tanto, cualquier acto de reproducción, distribución, comunicación pública y/o transformación total o parcial requiere el consentimiento expreso y escrito de aquéllos. Cualquier enlace al texto completo de estos documentos deberá hacerse a través de la URL oficial de éstos en Dialnet. Más información: https://dialnet.unirioja.es/info/derechosOAI | INTELLECTUAL PROPERTY RIGHTS STATEMENT: Full text documents hosted by Dialnet are protected by copyright and/or related rights. This digital object is accessible without charge, but its use is subject to the licensing conditions set by its authors or editors. Unless expressly stated otherwise in the licensing conditions, you are free to linking, browsing, printing and making a copy for your own personal purposes. All other acts of reproduction and communication to the public are subject to the licensing conditions expressed by editors and authors and require consent from them. Any link to this document should be made using its official URL in Dialnet. More info: https://dialnet.unirioja.es/info/derechosOAI

Dialnet

Dialnet AR

Rights and Science: R&S, ISSN 2531-1352, 2017, pags. 15-22

English

Genetic
genomic
and proteomic databases
Global governance
Right to privacy
Societal good

Genetic
genomic
and proteomic databases
Global governance
Right to privacy
Societal good
Christ, Hedley
Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

Ever since the mapping of the human genome, the amount of human genetic data now being collected has been called a tidal wave of data. Such data is being stored with the principal aim of using such data for research, primarily in genetic diseases, but not exclusively. Such databases become more powerful when they are linked, because of the increased number of DNA sequences that can be searched. However, this provides for significant problems of management and governance of these databases, not least because they hold genetic information on identifiable individuals and therefore, there has to be control over access to these databases. But, beyond such issues lie a number of legal problems which relate to patients’ rights and patients’ duties to society and medical research; questions of ownership, not only of the databases themselves, but also the genetic information stored in such databases, particularly with the issues related to intellectual property rights. This brief paper examines the need for governance of such databases, principally through soft law techniques of international regime analysis.

Article

Christ, Hedley

Christ, Hedley

Christ, Hedley

Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good

2017

https://dialnet.unirioja.es/servlet/oaiart?codigo=6178803

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