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Studies in Ethics, Law, and Technology

Editor-in-Chief: Cutter, Anthony Mark

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Consenting in Population Genomics as an Open Communication Process

Deborah Mascalzoni / Andrew Hicks / Peter P Pramstaller
Published Online: 2009-06-04 | DOI: https://doi.org/10.2202/1941-6008.1085

New advances in genomics changed the research landscape significantly in the last few years. The power and significance of already existing tissue collections is enhanced by their growing size, and all over the world national projects aim to connect with each other at the international level, calling for integrated and common regulations in the transnational research field. The post genomics era faces problems that are partially different from those within the classical bioethical framework. The challenge is to find new ways to deal with regulations in order to facilitate research without frustrating personal rights. Informed Consent has been the center of this wide debate. We propose a model for rethinking consent in an open-time/open-goal framework suitable to genomics research. Consensus becomes more than a single legal step and goes more in the direction of a participated governance mechanism, a circular open process of communication which the IC sheet signature is just one instance of. This approach provides a governance framework based on different levels of consensus and participation that already contains mechanisms to resolve conflicts between different instances and to protect both the interest of research and the rights of participants.

Keywords: informed consent; population genomics policy; public engagement; public trust

About the article

Published Online: 2009-06-04

Citation Information: Studies in Ethics, Law, and Technology, Volume 3, Issue 1, ISSN (Online) 1941-6008, DOI: https://doi.org/10.2202/1941-6008.1085.

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