Biobanking Initiatives Research Articles

Towards an international system of ethics and governance of biobanks: A ‘special status’ for genetic data?

The emergence of various types of biobank initiatives around the globe urges consideration of the creation of an international system of ethics and governance of biobanks. In the absence of such a system, biobanks may be doomed to failure, as their creation, existence and operation depends on public trust. While a biobank is certainly more than a collection of genes, the fact that it is a (potential) source of genetic information is, in the view of both the public and the authorities, its most sensitive element. This raises the question of whether the system should be built on the premise that genetic data are special. One of the few international points of reference, the United Nations’ International Declaration on Human Genetic Data, declares genetic data to be special and sets forth a number of special and novel rules. However, applying the Declaration to biobanks reveals a complication in that different standards will apply to different types of data contained in the same biobank and used for the same research. This complication provokes two opposite responses. Option A is to abandon the special status for genetic data, which urges a reconsideration of the hypothesis codified in the Declaration that genetic data are special. The opposite approach, Option B, is to afford all data contained in a biobank special status.

Technology Transfer in BioBanking: Credits, Debits, and Population Health Futures

Bioinformatics, the integration of information technology and biotechnology, is the primary means to make medical sense out of the map of the human genome, and bioinformatics capabilities continue to expand exponentially. Consequently, the demand for access to human biological samples and medical information has never been greater. This demand is giving rise to ambitious biobanking initiatives - meaning the organized collection of samples and medical information from human population.