Bases de données génétiques : vers un cadre éthique universel
Prof. Alexandre Mauron , Organisation mondiale de la santé (OMS) .
Projet de recherche
Bases de données génétiques humaines: Vers un cadre éthique global
Mots-clésBioéthique - Génétique
Ce résumé n'existe qu'en anglais
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. This position—which a large part of the community of scientists and bioethicists hold —reflects what the sociologist of science Robert Merton called “communalism” when referring to the public ownership of the fruits of scientific investigation. Stimulated by the free circulation of information, ideas and experiences, scientific knowledge is by nature allergic to secrets and appropriation. 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.
Human Genetic Databases: Towards a Global Ethical Framework
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