WADB Privacy Statement
Background/Overview
The WADB is a central facility for Western Australian medical researchers to securely store DNA used in their research to international best practice standards. The WADB consists of storage infrastructure (freezers and secure storage rooms), consumables and trained personnel to process and store these sample collections. The collections are managed by a state of the art electronic laboratory information system (LIMS) that enables bar-coding and automated sample tracking. The LIMS is hosted and managed by the Western Australian Genetic Epidemiology Resource (WAGER). To maximise their safety and protection (eg. against fire) all DNA samples are stored in ultra-cold freezers at two geographically separate sites.
Ethics Approval
Ethics approval of sample storage
The WADB itself does not collect any samples, but processes and stores samples collected by researchers for their research studies. All research groups who wish to use the WADB facilities must have the appropriate ethics clearance from their institutional Human Research Ethics Committee (HREC) and provide evidence of this ethics clearance to the WADB.
Ethics approval of the WADB
Both the WADB and WAGER comply with all relevant State and Commonwealth guidelines and legislation, including the Commonwealth Privacy Act 1988. The WADB itself has been approved and its operations are regulated by the HREC at the University of WA.
For further information about these approvals, please contact:
Executive Officer
Human Research Ethics Committee
University of Western Australia
Kate.Kirk@uwa.edu.au
Ph: +61 8 6488 3703
Biospecimens
DNA is extracted from human biological fluids such as whole blood or saliva. The WADB provides the infrastructure for the curation of DNA only, not the original biospecimen, nor serum or plasma. In some circumstances RNA will also be extracted and curated by the WADB but this will be by negotiation with individual researchers.
Purpose of DNA collection into the WADB
Despite having one of the best linked population-based health resources in the world (the WA Data Linkage System (WADLS) and informatics resources (WAGER and the Health Information Linkage Branch in the Western Australian Department of Health), there are currently no core facilities for large-scale dual site biospecimen banking in WA. By building upon extensive population resources, high-capacity technological platforms, and existing bioinformatics resources and expertise, the WADB will enhance the accessibility of WA medical research groups to these resources and in turn enhance the research that is aimed at understanding the genetic epidemiology of numerous important and common diseases.
By providing a large scale central facility it is hoped that this will lead to new collaborative networks within and between WA and Australian research groups, and will facilitate access to the new facility for all Australian researchers who have appropriate individual human research ethics committee (HREC) approval.
Data Security Measures
In line with international best practice standards, DNA samples will be physically stored in freezer facilities secured by swipe-card access. In addition, all DNA samples managed by the WADB are coded. This means that names, address or other identifiers are removed from the sample label and replaced by a study barcode As such, if anyone were to access the biospecimens without authorisation, they would not be able to tell who the specimen belonged to.
Data Protection
The barcode data will be stored on secure, network restricted servers located within a secure physical environment. Access to these servers is protected by multiple firewalls, user authentication, authorisation schemes and digital certificates. Secure data encryption is also enforced for all network data transfer. Regular data backups are performed and RAID technology is used to ensure data availability and high performance even in the event of any hard disk failure. The electronic security exceeds all relevant Australian Security Standards.
Staff
All WADB staff sign Covenants of Confidentiality ('Agreements') before they work with any confidential information.
Disclosure
The WADB will manage samples under its curation according to the directions of the particular researcher associated with those samples. However, the WADB may have to disclose information from the samples to third parties if required to by law (for example, by court order).
Withdrawing my Biospecimen
The WADB itself is not a research study but a storage facility for researchers. If you are participating in a study that uses the WADB facilities and you wish to withdraw from that study, please contact the study researcher directly. If you do choose to be withdrawn from the study, your sample will be removed from the WADB. The WADB will work closely with medical researchers to implement best practice standards for the process of withdrawing biospecimens.
