The human genome as public: Justifications and implications

Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genom...

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Publié dans:Bioethics
Auteur principal: Bayefsky, Michelle J. (Auteur)
Type de support: Électronique Article
Langue:Anglais
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Publié: Wiley-Blackwell [2017]
Dans: Bioethics
Année: 2017, Volume: 31, Numéro: 3, Pages: 209-219
RelBib Classification:NCH Éthique médicale
ZC Politique en général
Sujets non-standardisés:B Common Resource
B Genetic Privacy
B Genomics
B Santé publique
B common heritage
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Résumé:Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage (CH) framework and the common resource (CR) framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research.
ISSN:1467-8519
Contient:Enthalten in: Bioethics
Persistent identifiers:DOI: 10.1111/bioe.12329