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Thursday, 17 December 1992
Page: 5532

(Question No. 2446)


Senator Campbell asked the Minister representing the Minister for Health, Housing and Community Services, upon notice, on 25 November 1992:

  Is there a register administered by the Commonwealth which records Australians affected with genetically acquired physical and mental abnormalities; if so: (a) where is it located; (b) when was it established; (c) who administers the register; (d) for what purpose was the register established; (e) what information in regard to the relatives of an individual affected by the genetically acquired abnormality is recorded on the register; and (f) from what sources is the information recorded in the register acquired.


Senator Tate —The Minister for Health, Housing and Community Services has provided the following answer to the honourable senator's question:

  A register which records Australians affected with genetically acquired physical abnormalities is maintained by the National Perinatal Statistics Unit, an External Unit of the Australian Institute of Health and Welfare.

  (a) The register is located on computing systems maintained by the National Perinatal Statistics Unit located at the University of Sydney.

  (b) The data base was established in 1981.

  (c) The National Perinatal Statistics Unit administers the register.

  (d) It was established to provide incidence data on major structural birth defects and chromosomal abnormalities.

  (e) The information collected regarding the parents of the child varies between States and Territories but generally includes parental age, country of birth and/or ethnic group, marital status, previous pregnancies.

  (f) Information is acquired from notification forms of State and Territory health authorities, death certificates, notifications from cytogenetic laboratories, midwives' data collections, pregnancy termination notifications, autopsy and pathology reports.