Frequently asked questions

• Reading and understanding an online study information sheet;
• Providing consent for collection of data for current and future study purposes;
• Providing contact information; and
• Completing a 20-minute long online survey.

After completing the study, participants may be asked to donate a saliva sample, from which researchers can extract their DNA to identify specific genes associated with bipolar disorder.

Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

QIMR Berghofer will biobank DNA from saliva samples for immediate and future genetic analysis.

QIMR Berghofer Medical Research Institute will extract DNA from the saliva samples.

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 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.

Participant DNA will be stored at QIMR Berghofer Medical Research Institute.

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 bipolar from a 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 bipolar disorder will be publicly available in a scientific journal.

Health professionals who treat people living with bipolar disorder include GPs, psychiatrists, psychologists, mental health nurses, mental health social workers, and counsellors.

If you are experiencing mental health issues or suicidal feelings contact Lifeline on 13 11 14, BeyondBlue 1300 224 636, Suicide Call Back Service on 1300 659 467 or Headspace on 1800 650 890. If it is an emergency call 000.

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

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).