Australian Legal Framework Governing Linkage Projects
Australian Code for Responsible Conduct of Research, developed and endorsed through Australian Research Council (ARC), National Health Medical Research Council (NHMRC), and is the Guidelines required to be followed in accordance with the Privacy Act (Cwth) 1988.
The Australian Government Cross Portfolio Statistical Integration Committee and Working Group (CPSIC) have developed the set of high level principles for statistical integration were endorsed by Portfolio Secretaries in February 2010
In addition, the set of governance and institutional arrangements for data integration, were endorsed by Portfolio Secretaries in October 2010.
Population Health Research Network (PHRN) - About Data Linkage
Peter Christen's 2012 book on Data Linkage entitled 'Data Matching - Concepts and Techniques for Records Linkage, Entity Resolution, and Duplicate Detection'
Adelaide R User Group - Jonathan Tuke Email: firstname.lastname@example.org
South Australian Human Research Ethics Committee
Families and Communities Research Ethics Committee
Aboriginal Health Council of South Australia (AHCSA)
Northern Territory Ethics Committees
Workshop: STATA Statistical Software Package
Training: Australian Bureau of Statistics Training Calendar
Workshop: Free Online Workshop by Population Data BC
Short instructional video on Privacy Protection for Polpulation Studies involving Genomic / DNA data
There is a critical need to ensure that research and data linkage methods involving studies using the Genomic / DNA data protect the privacy of individuals. There are a combination of privacy protecting anonymising and suppression steps that need to be considered when undertaking research; particulary where there are a small numbers of results.
Vanderbilt University Medical Center have prepared an instructional video describing the privacy protection methods when using Genome-Wide Association Studies (GWAS). The video provides useful information and assessment of privacy protecting process where Genomic / DNA data is linked with other records, and the situations where privacy may be compromised and a case study showing steps to manage this.