Genetics of Non-Identical Twinning

Please find instructions on how to provide a saliva sample into the tube in the Related Materials section below. Alternatively, please watch the instructional video here: https://youtu.be/eu4zNL_DjhM

Volunteers must be:

• Female
• A mother of non-identical (dizygotic, or DZ) twins
• Aged 18 or over

We want to find genes for non-identical twinning, so we can understand why some women have non-identical twins, and others do not. To find genes, research studies need a large number of participants, so we would like to collect information from as many people in Australia as we can.

Participants in the Genetics of Dizygotic Twinning study will not be paid. However, Australians who choose to volunteer will be contributing to a national effort to unravel the genetics of DZ twinning, and we may as a result learn more about the genetics of twins and female fertility. Your participation is important to enable scientists to understand the genetic mechanisms of twinning.

After completing the study, participant may be asked to donate a saliva sample, from which researchers can extract their DNA to identify specific genes associated with non-identical twinning. Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

Study participation is strictly confidential. All patient information provided will be maintained in accordance with the Commonwealth Privacy Act (1988) and National Health and Medical Research Council (NHMRC) Guidelines.

QIMR Berghofer 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 compartmentalized – 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 compartmentalization protects the confidentiality of participants. When results are published they are aggregated together, so no individual results are included.

Participant DNA will be stored at QIMR Berghofer.

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.

Your participation is important to enable scientists to understand the mechanisms of twinning.

The analysis we conduct on a participants saliva sample will not tell us that individual participants 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 DZ twinning from a large group of people.

A copy of the participant information sheet can be found in the Related Material section below.

If you are having trouble producing a sample, please visualise squeezing a half-lemon. Please note that any volume is useful, even with bubbles. If you are still unable to produce a sample, take a teaspoon of water, vigorously swish it around in your mouth and add that to the tube.