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Human Genetic Databases: Towards a Global Ethical Framework


Research Project

Human Genetic Databases: Towards a Global Ethical Framework

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genomics - human genetic databases


In the past decades, the collections of biological samples and genetic data have raised a substantial ethical discussion on issues that had been commonly considered well understood. These issues were framed in terms of either individual rights or collective interests, with a prevailing impression that the distinction between the two is easy to draw. Genetic data that have contributed to scientific knowledge ought to be considered public goods. On the other hand, personal genetic and genomic data pertain to the private sphere of individuals, thus reclaiming a role for two of the cardinal principles of medical ethics: the obligation to keep those data confidential and to protect the rights of the individuals involved. What the evidence suggests, however, is that the issue lies not on genetic data or genetic knowledge themselves, but rather on the way genetic/genomics knowledge and data are obtained.


Recherche en génomique: droits, intérêts et perspectives futures
French | [1957 ko] > download
"Human Genetic Databases: Towards a Global Ethical Framework"
English | [22 ko] > download
Cuatro escenarios que se han utilizado como base para las entrevistas del proyecto "Genetic Databases-Towards a Global Ethical Framework"
Spanish | [197 ko] > download