Consenting in Population Genomics as an Open Communication Process
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Deborah Mascalzoni
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.
©2011 Walter de Gruyter GmbH & Co. KG, Berlin/Boston
Artikel in diesem Heft
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- Clinical Genomics Data Use: Protecting Patients Privacy Rights
- Consenting in Population Genomics as an Open Communication Process
- The Single Equality Bill: A Missed Opportunity to Legislate on Genetic Discrimination?
- Mr. Collie Goes to London: - The House of Lords Decision in Common Services Agency vs. The Scottish Information Commissioner
- Ethics, e-Inclusion and Ageing
- A Wonderland of Disposable Facts
- Chains of Trust and Duty in Health Information Management
- Editorial
- The Changing Ethical and Legal Implications of Information in Health: A Guest Editorial
Artikel in diesem Heft
- Article
- Clinical Genomics Data Use: Protecting Patients Privacy Rights
- Consenting in Population Genomics as an Open Communication Process
- The Single Equality Bill: A Missed Opportunity to Legislate on Genetic Discrimination?
- Mr. Collie Goes to London: - The House of Lords Decision in Common Services Agency vs. The Scottish Information Commissioner
- Ethics, e-Inclusion and Ageing
- A Wonderland of Disposable Facts
- Chains of Trust and Duty in Health Information Management
- Editorial
- The Changing Ethical and Legal Implications of Information in Health: A Guest Editorial
