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). TRA will not provide this information to any researchers without your prior consent.
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.
See below for some important notes regarding your privacy and confidentiality in these contexts.
- When you agree to be involved in a research project, TRA provides your details to the researchers involved as described above. This means they are aware of your identity.
- However, as all research in Australia is conducted under strict ethical principles, this means that you will not be identified in any publication arising from the research.
- It is possible that some researchers will wish to refer to you in publications by a fake name (a pseudonym) to illustrate a particular example of interest in the results. This would only occur if you gave explicit permission.
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”. The activities of TRA must also conform to the Health Records Act 2001 (Vic) and the Privacy and Data Protection Act 2014 (Vic), which adopts 10 Information Privacy Principles (Schedule 1).