Governance Mechanisms and Population Biobanks: Building a Framework for Trust

- GenEdit
Author/s: -Wallace, Susan -Bedard, Karine -Kent, Alastair -Knoppers, Bartha Maria
Journal: GenEdit
Year: 2008
Volume: 6
Issue: 2
Pages: 1
Start Page: 1
Abstract:

Biobanks have become increasingly important for the study of health and disease.
Population biobanks are resources for the study of common diseases. They link genetic
data with information on health status, lifestyle and environmental factors. Public trust is
vital to these biobanks, as they depend on the altruistic participation of individuals. To
secure this trust and good will, population biobanks have put in place various governance
mechanisms, for example, independent oversight committees and data access
committees. In some countries, specific legislation has been enacted, while others rely on
guidelines and existing general health, safety and data protection legislation. This article
examines the importance of public legitimisation, why governance is important in the
context of biobanks, and the governance mechanisms that biobanks currently use.

URL: http://www.humgen.org/int/GE/en/2008-2.pdf