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Biobank governance in the post-genomic age
Herbert Gottweis1, Georg Lauss
1Department of Political Science, University of Vienna, Vienna, Austria. herbert.gottweis@univie.ac.at.
Personalized Medicine
|May 23, 2018
Summary
Effective biobank governance requires participatory structures that engage patients and the public in transnational research. Improving biobank communication ensures long-term project legitimacy and stakeholder commitment.
Area of Science:
- Bioethics
- Public Health Policy
- Biotechnology Governance
Background:
- Biobank governance frameworks regulate relationships between citizens, society, and biobanks, addressing consent, privacy, ownership, access, and benefit sharing.
- The evolution of biobank research towards transnational projects and post-genomic medicine necessitates updated governance models.
- Traditional bioethical-theoretical approaches are insufficient for contemporary biobank challenges.
Purpose of the Study:
- To propose novel governance structures for biobanks operating in transnational and post-genomic research contexts.
- To emphasize the need for participatory arrangements that incorporate public and patient perspectives.
- To enhance the social-political and communicative competence of biobank infrastructures.
Main Methods:
- Analysis of current biobank governance models.
- Evaluation of the limitations of purely theoretical bioethical frameworks.
- Conceptualization of participatory governance mechanisms for transnational biobanks.
Main Results:
- Participatory arrangements are crucial for responsive and legitimate biobank governance.
- Transnational biobank operations require governance structures that extend beyond local or national levels.
- Enhanced social-political and communicative capacities are vital for biobank infrastructure.
Conclusions:
- Future biobank governance must prioritize public engagement and transnational collaboration.
- Developing responsive, participatory, and communicative governance is key to ensuring the long-term legitimacy and sustainability of biobank projects.
- Integrating diverse stakeholder views strengthens the ethical and operational foundation of biobanks.
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