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Public Views on Sharing and Storing Children’s Genomic Data

Research project

What is the study about?

Genomic sequencing is a type of genetic test that can be used to help identify the causes of disease in people who are sick. This type of test has been used in children who have illnesses that are thought to be genetic. This testing is helping identify treatment options for some children, which can be lifesaving.

Genomic sequencing creates a lot of data and from it we can learn a lot more than just the cause of a child’s illness. What we see in the data depends on the way we look at or analyse it. We could look at the data in a way that shows us if the child is at risk of developing other severe and treatable conditions in childhood or even adulthood. To do this, their data will need to be stored somewhere and be accessed at different time points.

The data from genomic sequencing can also be used to benefit other people. The data could be shared on a database, which may help find the genetic cause of disease in other children or benefit science. Or it could be shared with pharmaceutical companies to help develop new medications.

We want to know your views about whether you think this data should be stored and shared, if so, when, by whom, and for what purpose.

What is involved in participating?

The study will involve taking part in a discussion (called a focus group) which will be conducted online via Zoom. This means you can do it from your own home. Each focus group will include between 4 and 6 participants. The focus group will take 1.5 hours and at a time that is convenient for you and the other participants. The focus groups will be running in November and December 2021. You will also be asked to watch a 10-minute video and read a short information sheet to prepare for the focus group. You will be reimbursed $75 for your time after you take part in the focus group.

If you are interested in finding out more information about the study, please register your interest by clicking the “Register now” button below to complete a short registration form and we will be in touch with you soon.

Register now


If you have any questions about the project, you can contact the study team at

You can contact the Director of Research Operations at The Royal Children’s Hospital if you:

  • have any concerns or complaints about the project
  • are worried about your rights as a research participant
  • would like to speak to someone independent of the project.

The Director can be contacted by telephone on (03) 9345 5044.

This project has received ethical approval from The Royal Children’s Hospital Melbourne Human Research Ethics Committee (HREC ID: 79393).