WA Family Connections Project
The aim of the WA Family Connections Project is to create a system of electronic links representing genealogical relationships for the WA population to be used as a research tool in conjunction with health data to help study the inheritance of disease. It is supplementary to the WA Data Linkage System and has been operating since 2003. Health data are not stored with the links that are created, but researchers may use the WA Family Connections project to account for genetic relationships in the analysis of their health data.
The genealogical links are created using information from birth, death and marriage registrations. Phase 1 of the project has involved creating genealogical links from information recorded on electronic birth registrations that are available since 1974 and electronic death and marriage registrations available since 1984, totalling approximately 1.3 million records. Phase 2 will entail encoding genealogical links from earlier paper-based birth, death and marriage registrations, with an initial focus on the 0.9 million records available since 1950.
Population-based genealogies are rare due to the challenges of developing and maintaining such a resource on a large scale. The combination of WA genealogy and population health data linked through the WA Data Linkage System is a unique resource to help estimate disease risk and to understand how diseases are inherited.
Currently, the project may support genetic and environmental epidemiological research using up to three-generational pedigrees. Ultimately, the data may be used to assess the degree of relatedness of individuals within study samples, assist in locating common ancestors and allow estimates of genetic risk.
Genealogical data can be requested for research projects and approximately 15 research projects have been approved since 2003. The subject matter of these projects has included: cancer risks based on family disease patterns; burden of genetic disease in the WA population; socio-economic inequalities in child health; and the identification of familial risk factors for diabetic retinopathy.
Reference:
Glasson EJ, de Klerk NH, Bass AJ, Rosman DL, Palmer LJ, Holman CDJ (2008). Cohort Profile: The Western Australian Family Connections Genealogical Project. International Journal of Epidemiology, 37, 30-35.
If you would like more information about the WA Family Connections project, please contact Emma Glasson at Emma.Glasson@health.wa.gov.au.