Biobanking in Aotearoa: A Case Study of the New Zealand Rare Disease Biobank Operated by the NZ Institute for Rare Disease Research Ltd

Abstract

In the 21st century there has been a significant expansion in the knowledge available about human genes and their relationship to human health and illness. The completion of the Human Genome Project, developments in the digital processing of large bodies of genetic information and the availability of equipment that enables the visualization of cells at the molecular and submolecular level have generated escalating interest in the collection and analysis of samples of human and animal tissue. While systematic repositories of biological tissue have been a core resource for scientific work for many years, there is now increased interest in the establishment of tissue collections from which DNA can be derived and the possible genetic analysis of samples collected for other purposes. These repositories of tissue are a vital resource for public good scientific researchers and commercial biotech companies. Increasingly they are referred to as ‘biobanks’ – resources in which communities and nation states and sets of nation states ‘invest’ as a component of ‘the knowledge economy’. Some of these biobanks are population and public health focused – directed at identifying the interactions among genes, lifestyle factors (such as smoking and diet) and the impact of different social and physical environments. Other biobanks are more specialized and directed at creating tissue repositories associated with particular disorders. While DNA analysis may be component of the use of these repositories, they are also used to derive cell lines, explore cell responses to particular agents, develop diagnostic tests and inform innovation in treatment. This report provides an overview of an emerging biobanking initiative – the NZ Rare Disease Biobank. This biobank is owned and operated by the NZ Institute for Rare Disease Research Ltd, a charitable company owned by the New Zealand Organisation for Rare Disorders (NZORD). The goal of the biobank is to encourage research relating to rare diseases in Aotearoa New Zealand through facilitating the collection of new tissue samples and the systematic documentation of collections of animal tissue relevant for the study of rare human genetic disorders. This initiative involves collating information about the available animal models relating to rare diseases generated by researchers in a range of different research centres and will eventually involve the collection and systematic storage of human tissue from people with rare disorders and their families. This New Zealand biobanking experiment is set in the context of international trends in the development of tissue banks, particularly patientadvocacy group involvement with the establishment of biobanks.