2967.0 - Information Paper: Parliamentary Inquiry into the Treatment of Census Forms: Submission from the Australian Bureau of Statistics , 1997
ARCHIVED ISSUE Released at 11:30 AM (CANBERRA TIME) 18/07/1997 First Issue
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THE VALUE OF NAME IDENTIFIED RECORDS FOR MEDICAL, SOCIAL AND GENEALOGICAL RESEARCH RELEASED AFTER A SIGNIFICANT PERIOD OF TIME
b any proposal would have to be for statistical purposes only. No submissions supporting the retention of census forms were received from research institutes or organisations, epidemiologists or other members of the medical profession despite ABS actively soliciting submissions for epidemiological research. Indeed, the NSW Health Department opposed census form retention in a submission to the ABS putting the view that "public confidence and the individual right to information privacy dictates the need to destroy forms once they have been committed to a computerised record". The Department also saw the quality of census data as paramount in fulfilling its information needs. Effective medical research requires record linkage and possibly, immediate/early access to census records Australian Archives has conducted evaluations of name-identified records from both the 1991 and 1996 censuses. In both these studies Australian Archives assessed the potential uses of census records for medical research but still concluded that census forms should be destroyed to ensure an effective census. For example, the 1991 study (p13, 1991 Census of Population and Housing: Report on Evaluation of name-identified records) identified one of the techniques used to advantage as being record linkage. Record linkage is the linking of records on defined groups of people in order to identify an association between two or more factors or variables. Overseas census records (for instance, the United Kingdom and Scandinavia) have been used for some time to link the characteristics of people belonging to groups believed to be at risk with indexes containing information on health status. Such linkages are undertaken immediately after the census, not after a number of years. The ABS is not aware of any medical outcomes or breakthroughs resulting from such record linkages overseas. Genetic research relies on immediate access to census records and using census records as a population register ABS research suggests that the benefits of using census returns for genetic research overseas have rested solely in using the census to trace family relationships and to construct large family pedigrees (ie using the census records as a population register). The approach usually adopted is to trace back for several generations the ancestors of a patient diagnosed with a hereditary disease. Descendants of these ancestors are then traced so they can be identified and advised to consult with a medical practitioner. Such research requires immediate access to the census forms and involves the following steps, even if the research goes back only one generation: a. use the patient's name to locate his/her census form from the latest census so the names of the patient's parents from the same form can be found; c. use the names of the siblings from step b) to locate their forms from the latest census to find out the names and addresses of their children. MATCHING CENSUS RECORDS WITH OTHER RECORDS RAISES SOME SIGNIFICANT PRIVACY ISSUES In its 1996 evaluation into name-identified census records (p10, 1996 Census of Population and Housing Appraisal Report for the Disposal of Name-Identified Census Records), Australian Archives said that:
"Overseas experience suggests that record linkage techniques are at their most effective when records: The report noted that "such provisions would appear to violate the general notion of privacy as it is currently defined by the Australian Government (and generally recognised by the community), in which case specific special access conditions would be required." The AGB McNair research (see Sections 3 and 4 above) suggests that the general public would react negatively to a suggestion that individual named records from the census be matched with other administrative records, particularly soon after the census. Further, the Information Privacy Principles of the Privacy Act, 1983 would require householders to be fully informed of such intended uses at the time the census is conducted. A number of alternative sources of data is available The census data file is itself capable of supporting a wide range of medical research at the aggregate level. Census data can be customised for research by generating statistical tables from the electronic files kept in the ABS containing the census characteristics of persons and households (other than names and addresses) reported on census forms for the determination of target "at-risk" populations. At the individual level, Australia has a wide range of data sources which can be used for medical research purposes, such as records of births, deaths and marriages as well as comprehensive hospital records and information available from Medicare and from the health funds. Information can be obtained through specific studies or surveys of those individuals or groups of individuals in the selected target group or by recording relevant information in registers. VALUE FOR HISTORICAL RESEARCH ABS has received no demand for census records for historical research In this context historical research refers to research conducted by professional historians and sociologists, as distinct from genealogical studies. As part of its consultation for the 1996 Census the ABS received no submissions supporting the retention of census forms from historians. While census records may provide some information of value for historical research for reasons set out elsewhere they would be difficult to work with. Of course, the availability of masses of archival records no matter how valuable they may seem, is no guarantee that future researchers will use them. A New Zealand archivist commented that he recalled
VALUE FOR GENEALOGICAL AND SOCIAL RESEARCH ABS received a number of similar submissions from genealogists As part of its consultation process for the 1996 Census, the ABS received a large number of similar submissions supporting the retention of census forms from family historical societies and genealogists. These argued that census forms should be retained for social and genealogical research. One submission, from the Australian Society of Archivists Incorporated, argued for the retention of census forms for research for 'many disciplines and genealogy'. It supported the argument of retention through the use of census data overseas for research in many fields, such as demography and the medical profession; 'the argument is particularly compelling in the area of epidemiological research'. This and other similar submissions did not, however, provide specific examples or possible applications. Those submissions criticising the destruction of census forms failed to explain:
A number of alternative sources of data are available Unlike many other countries, Australia benefits from a diverse range of alternative and comprehensive data sources which are available now or which will be available for use in genealogical and family history research purposes into the future. These include records of births, deaths and marriages, electoral rolls and telephone directories. Information available from these sources includes, where appropriate, the names of individuals, age, sex, name of parents and/or children, including mother's maiden name, usual residence, marital status, and occupation of individual and parents. There are numerous other potential sources of information which are of potential significance to genealogical researchers, which include the following:
business records cemeteries and cemetery records directories and almanacs educational institutions existing genealogical charts hospital and asylum records inquests insolvency and bankrupt files land records local government documents (including rate books and building approvals) local historical societies manuscripts, letters, diaries maps, gazettes newspapers occupational records parish registers published family histories and bibliographies published local histories research directories and indexes shipping logs wills, probates and letters of administration; and undertakers and monumental mason's records. Numerous records are kept by the respective State Archives and by Australian Archives, such as old files of government departments, lists of immigrants, naturalisation papers and land records. In addition, genealogists and family historians can create records of their own family trees using methods adopted in other cultures (such as the Chinese) so these records can be passed on to future generations for them to trace their roots. The plethora of research sources suggests that the value of using the census as an additional source in 75/100 years time is unlikely to be large, certainly not enough to justify undermining the effectiveness of the census for the immediate future. This has been well summarised by a New Zealand archivist, who said in 1992 that:
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