Privacy

Overview of how the privacy of NSW-CDS cohort members is protected and maintained.

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How is privacy protected?

The research databases for the NSW Child Development Study do not contain any information that could identify a child, parent/caregiver, or school. Only non-identifiable data is provided to the NSW-CDS Research Team.

The Record Linkage processes ensure that researchers cannot re-identify study participants, because the researchers do not hold the personal identifiers for the research participants – they access only the research data that is coded by a unique ID number. Only staff at the CHeReL can access the personal identifiers associated with each ID number, but they have no access to research data.

The Middle Childhood Survey (MCS) questionnaire responses (data) and personal identifying information of participants in the MCS are stored separately (held by separate organisations), so that no individuals in the MCS can be identified. The MCS data is coded by a unique MCS-ID number. Only the researchers conducting the study have access to the data collected during the MCS, and the University of New South Wales is the Data Custodian of MCS data. On behalf of the University of New South Wales, the Centre for Health Record Linkage (CHeReL) holds only the MCS-ID and personal identifiers (without having any access to the MCS data).
 

How is privacy maintained?

No individuals will be identified at any stage in the research. Ethical guidelines require that information be obtained in a way that ensures no individuals can be identified to the research team. Any record linkage will be undertaken according to strict privacy protocols (CHeReL), protected by NSW State and Commonwealth laws (for more information please see: Information about Record Linkage).

The first two Record Linkages (waves 1 & 2) obtained ethical approval from the NSW Population & Health Services Research Ethics Committee (Reference Numbers AU/1/297807 & AU/1/1AFE112), in accordance with the National Statement on Ethical Conduct of Human Research (and associated Guidelines approved under Section 95A of the Privacy Act 1988).

Ethical approval of the MCS has been obtained from the UNSW Human Research Ethics Committee (Reference Number HC14307), in accordance with the National Statement on Ethical Conduct of Human Research (including associated Guidelines approved under Section 95A of the Privacy Act 1988 relevant to Catholic and Independent schools, and Section 41 of the Privacy and Personal Information Protection Act 1998 relevant to NSW public schools).