In the first instance, TRA provides research groups with identified information on samples of twins who have agreed to participate in a particular project. This information usually consists of each twin’s full name and address, date of birth, sex and zygosity (if known).
Projects facilitated by TRA generally require the use of de-identified samples or data for 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.
TRA 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
On occasion TRA 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).
TRA 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).
The activities of TRA 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.