Privacy Statement

Confidentiality

In the first instance the ATR provides identified samples of twins who have agreed to participate in a particular project to the research group. This will usually consist of each twin’s full name and address, date of birth, sex and zygosity (if known). Projects facilitated by the ATR generally require the use of de-identified samples or data i.e., a reversible process in which the identifiers are removed and replaced by a code.  Those handling the data subsequently do so using the code.  If necessary, it is possible to link the code to the original identifiers and identify the individual to whom the sample or information relates.

The ATR does not provide:

• complete anonymity of participants (i.e., researchers will know the identity of participants).
• participants with the option of being identified in any publication arising from the research.
• for participants to be referred to by pseudonym in any publication arising from the research.
• personal information obtained from a Commonwealth Department or Agency.

On occasion the ATR may provide:

• anonymised samples or data (i.e., an irreversible process whereby identifiers are removed from data and replaced by a code, with no record retained of how the code relates to the identifiers. It is then impossible to identify the individual to whom the sample of information relates).

The ATR is bound by the Section 95A of the Privacy Act 1988, “Guidelines for National Privacy Principles About Health Information” (Section 95A attached, see Appendix 8) as it is not a Commonwealth agency and can be described as an organization with a turnover of $3 million or less that “trades in personal information”. It may also be a “Commonwealth government contractor” in terms of receipt of the Enabling Grant from the NHMRC.

The activities of the ATR must also conform to the Victorian Information Privacy Act 2000 which came into effect in September 2002 and adopts 11 Information Privacy Principles (Appendix 9) based on the 10 National Privacy Principles (Appendix 10) set out in the Privacy Act.  The IPPs and NPPs are very similar.  The IPPs provide guidelines for (1) collection and (2,3) solicitation of information (4) storage and security (5) information relating to records (6) access (7) alteration of records (8) checking accuracy of information before use, (9) use for relevant purposes (10) limits on use and (11) disclosure.

The NPPs provide guidelines for almost identical issues: (1) collection of information, (2) use and disclosure of information, (3) data accuracy, (4) security, (5) openness, (6) access and correction of records, (7) use of identifiers, (8) anonymity, (9) transborder data flows, and (10) sensitive information.

Some NPPs appear to apply regardless of when the information was collected from the ATR members, while other NPPs apply only to information collected after the private sector amendments commenced (21 December 2002). The NPPs 3, 4, 5, 7, and 9 (concerning respectively data quality on use and disclosure, data security, privacy policies and openness, Commonwealth Government identifiers and transborder data flow) apply regardless of when the information was collected by the ATR. NPPs 1, 2, 3, 6, 8, 10 (concerning respectively collection, use and disclosure, data quality and collection, access and correction, anonymity and collection of sensitive information) only apply to information collected after 21 December 2002.