A copy of the Participant Information Sheet can be found here.

Unfortunately, at this stage, we are unable to collect DNA samples from people living outside Australia. However, we are currently looking into options for people living outside Australia who would like to participate further in the research.

Alternatively, if you are returning to or visiting Australia in the next 12 months or so, you are welcome to undertake the survey then and we can forward a saliva collection kit to your Australian contact address – just contact us 3-4 weeks before you arrive and we can see what we can arrange.

Your health data and biological sample will be used strictly for medical research.

All research undertaken at QIMR must be approved by the QIMR Human Research Ethics Committee, to ensure that research projects that involve the use of health data and biological samples comply with the Commonwealth Privacy Act, National Health and Medical Research Council (NHMRC) guidelines, as well as other applicable national and state laws and regulations. This prevents researchers from using any sample or data collected from a participant without regulation and review from a third party.

Permission to use your health data and biological sample is sought through two stages: a scientific sub-committee that reviews the scientific merit of any data/sample sharing; followed by an ethics committee [made up of varying professions, laypeople and community members] who must determine whether the request is consistent with the participant’s original consent.   If the committee does not approve, then researchers are not allowed to proceed unless they re-contact the participant seeking their permission to share/use their information.

We may also use your de-identified health data and sample for future medical research projects, but can only do so with permission from our institutional Human Research Ethics Committee.

At the end of the study, de-identified and limited participant survey and genetic data may be deposited in a large participant database that is accessed by researchers not directly involved in this study, but who will be investigating other medical diseases and disorders in the future. The repository is a controlled-access database which means only those authorised by a research ethics committee [undergoing the same application protocol as mentioned above] will be permitted access. The only identifier participant's data will have is a linkage ID. The key to linking this data back to your personal details is held securely by the QIMR Berghofer data research team and is not shared with anyone else.

Your personal details, questionnaire data, biological sample and genetic information will all be stored in separate, firewalled password protected databases, and the only link between your personal details and your other data is your participant identification number.  Linking your personal details and the other datasets using this number is restricted to members of the QIMR Berghofer data collection research team. Internal access to these databases and samples are compartmentalised - the data collection team can only access your personal and survey information, analysts can only access your survey information and genetic data, and laboratory staff can only access your biosample and DNA [the latter two groups only have your ID number]. This compartmentalisation protects the confidentiality of participants. When results are published they are done as aggregated data altogether, no individual results are included.

Under the MDD project we do not plan to do any sequencing. We plan to genotype ~500,000 markers in the genome using a genotyping chip.

This research is not designed to provide any clinical results to participants. The study does not undertake individual analysis of each sample provided, but rather will undertake an overall comparison of genetic markers on all samples provided.

If you have a personal interest in obtaining a genetic test on your DNA, we suggest you consider contacting a genetic testing entity which can provide such testing.

The analysis we conduct on a participant’s saliva sample will not tell us that individual participant’s health status, ancestry or predict health outcomes. Researchers are not looking for these particular genes in their analysis; rather they are searching for groups of common genes involved in mental health from a very large group of people.

We certainly want to feedback as much as possible to participants about the study, so we provide all participants with an update of the project's progress and results via email at the end of each data collection year. Furthermore, when we publish the results from the research, any genes identified in the development, course or treatment of depression and the effects of anti-depressant medication will be publicly available in a scientific journal.

In this study you do not need to disclose to Insurers that you have had a genetic test.  This is because we are not providing participants any personal or family information from the research.  The only results you will receive are those from the scientific papers we publish from the combined genetic analysis of all participants data.  For further information, refer to this summary article discussing insurance and genetic research, as well as Section 10.3 of the Financial Services Council policy on genetic testing and research (fsc.org.au).