The NHMRC has published a National Statement on Ethical Conduct in Human Research.  The statement emphasises each institutions’ responsibilities for the quality, safety and ethical acceptability of research that they sponsor or permit to be carried out under their auspices. This statement includes those institutions whose “employees, resources and facilities are involved in research”. The ATR is invested with responsibility under these guidelines to monitor the ethical conduct of its own activities and the activities of research projects that involve ATR members. This is a responsibility we take very seriously.

In the first instance, the ATR 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 the ATR 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.