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What does being part of GenV involve?

GenV aims to make things easy for families who join.

A GenV team member will visit you for 15-20 minutes after your baby is born—usually while you’re in the hospital.

In this visit, we will explain GenV and answer any questions you have, before asking if you are willing to take part with your baby. Where possible, we also invite your baby’s other parent to participate, to help give us a more complete picture of your family.

What happens after I choose to sign up?

Once you consent to take part in GenV (your consent covers you and your child), our work will happen mostly in the background, so that you you’re free to enjoy life with your new baby. We will stay in contact mainly by email, messaging or similar.

After you give consent, you agree for us to do the following:

01 GenV can bring together information and samples that already exist

GenV can bring together information and samples that already exist

This information and samples includes:

Information

  • that services already collect (or have collected) for you and your child (examples include health, education services).
  • related to your neighbourhood and where you spend your time (examples include levels of air pollution and childcare services near your home).

Samples

  • already collected from you or your baby (examples include blood tests).

Learn more about the data GenV collects 

02 GenV can make brief contact with you from time to time

GenV can make brief contact with you from time to time

This contact is to follow up about the health, development and wellbeing of you and your child.

For example, around four times per year over the first few years of your child’s life, GenV will invite you to provide updates on how you and your child are going. These contacts may take between 3 and 20 minutes. You decide each time whether to participate. Contacts may include:

  • Short surveys and updates that you fill out.
  • Health and development measurements. These may cover things like memory, speech in older children, and heart rate. You might take a short video of your child, or you or your child might play a game on an electronic device (like your phone). They will be short and fun.
  • News and updates from GenV. This may include invitations into other studies that are working with GenV.

We may also offer to assess your child face-to-face when they are older, for example when they start school. Again, you can decide on each occasion whether you want to take part or not.

03 GenV can safely access, store and use samples and information 

GenV can safely access, store and use samples and information 

We join up the information you give GenV with information from services like the ones above.

Learn more about privacy and safe use of your data.

04 GenV can tell services that you and your child are participating

GenV can tell services that you and your child are participating

For us to bring together information that already exists about you and your child, we have to let services know that you have given us consent. In addition:

  • Other services may help GenV with short surveys or assessments during your normal visits to them. For example, your child’s nurse might offer an extra vision test to your child.
  • Services may be able to update GenV with your new contact details, so you don’t have to (unless we know you no longer want to take part in GenV). Services include health and education providers like your Maternal & Child Health nurse, your doctor, hospitals, Medicare, kindergartens and schools. We don’t share your research data with them in this situation.

In addition to the above, you can also separately choose to give consent to the following options:

A) A cheek swab from you and your child. This will take place during your initial visit from a GenV team member if you choose to provide it.

B) Use of samples for genetic research (including the saliva from the cheek swab), to learn how genes influence health and development and provide more valuable insights.

With these options, you can even decide to take part in all or only some of GenV. You can also choose to withdraw from different aspects of GenV at any time.

Learn about your options and changing your mind.