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What information is collected?

We aim for GenV to be very easy for you. When you join GenV, we tell you that we access standard information and samples that services already collect. Services include hospitals, clinics, schools and kindergartens, the government and other providers. See the data and samples that GenV has already accessed here. 

GenV also collects some information from you, and you can provide some samples. Services don’t collect this information. 

These rich data from services and GenV could help build a better, healthier future.   

See below what a typical journey could look like for your family. It shows examples of data and samples along the way. 

When you have a baby, services collect standard information including…

    Standard information already collected Additional information that GenV collects
  • Before your baby is born…

    • Tests during pregnancy are very common.

      Information and samples are collected by services during pregnancy. These ensure you and your baby are healthy.

      You may receive information on GenV during this time to learn more about us and so that you’ll know to expect us after your baby is born.

      Standard information collected:

      • Ultrasounds
      • Blood tests
      • Group B Strep (GBS) test


      Ultrasounds are conducted to check your baby’s health and growth in pregnancy. They are saved as digital scans.

      Blood tests

      Many women have a screening blood test. This test is taken around 10-to-12 weeks of pregnancy and tests your baby for certain conditions.

      Group B Strep (GBS) test

      This test involves a swab that is collected around 35-37 weeks. It is used to test for Group B Streptococcus (or GBS), which is a bacterial infection.

  • When your baby is born…

    • After your baby is born, routine ‘screenings’ or tests are done.

      These check your baby’s health and development. This is also the time when GenV will visit you and give you and your family the chance to join us.

      Standard information collected:

      • Newborn blood screening
      • Infant hearing screening
      • Short survey from you

      Newborn blood screening

      A blood sample from your baby’s heel is taken and stored on a card. This is called the newborn screening card, or ‘heel prick test’. The test checks for rare conditions that can be treated.

      Infant hearing screening

      All Victorian newborns are offered a hearing screen. The screen checks for any hearing loss or impairments. It is usually done in the first few days of your baby’s life.

      Short survey from you

      You complete a short survey. It has questions about you, your family your pregnancy and birth. This information is really important to us. It lets GenV understand other families like yours.

      GenV information collected:

      • Your consent to join GenV
      • Saliva cheek swab from you and your baby
      • A stool sample from your baby
      • A breastmilk sample

      Your consent to join GenV

      A GenV team member will visit you shortly after your baby is born. This is usually in the hospital. We will go through the Parent/Guardian Information Statement. We’ll also answer any questions you may have. You can join by signing a consent form.

      Saliva cheek swab from you and your baby

      Parents will be asked if they would like us to collect saliva swabs from you and your baby. These swabs will help us better understand how genes and environment influence health and development.

      These swabs are entirely optional and do not stop you from choosing to join GenV.

      A stool sample from your baby

      We will offer you a nappy swab kit. The kit collects a small sample of stool (poo) from your baby’s nappy when the baby is about 7 days old or at any time after that. These samples can be used to learn how the gut affects health.

      This is entirely optional and does not stop you from choosing to join GenV.

      A breastmilk sample

      We will also offer you a breast milk collection kit. If you are breastfeeding or expressing, you can use this kit to collect about a teaspoon of breastmilk when your baby is about 7 days old or at any time after that. This supports research into child and maternal health and nutrition.

      This is entirely optional and does not stop you from choosing to join GenV.

  • As your toddler grows…

    • As your child grows, some important information is collected by hospitals, daycare centres, and more.

      This can include:

      Standard information collected:

      • Immunisations and vaccinations
      • Maternal and child health visits data
      • Childcare or Kinder visits
      • Early health and development check-ins

      Immunisations and vaccinations

      If your child has had any vaccinations or immunisations, we’d like to access these records.

      Maternal and child health visits data

      You and your baby will see a maternal and child health nurse a number of times from birth to school age. The nurse works with families to care for babies and young children. It’s a free service for all Victorian families.

      Childcare or Kinder visits

      If your child attends childcare or kinder, we’d like to know about their attendance.

      Early health and development check-ins

      We check in with your family every few months. We send ‘GenV and Me short surveys and assessments. They ask about your and your child’s health, development and wellbeing. You can do them on our App or online.

      GenV information collected:

      • Early health and development check-ins

      Early health and development check-ins

      If you join GenV, we stay in touch 3 or 4 times a year. We check in with your family. Check-ins include things like short surveys or assessments. These will likely be done through your phone, tablet, or computer.

  • When your child starts school...

    • School is an important time.

      It’s often the start of formal education, and a time for lots of social and emotional development. It also means new information being collected on your child to help inform schools and services.

      Standard information collected:

      • School Entrant Health Questionnaire
      • Australian Early Development Census
      • National Assessment Program for Literacy and Numeracy

      School Entrant Health Questionnaire

      When your child starts school, you complete a survey about their health and wellbeing. This happens for all preps (first year of school) in Victoria.

      Australian Early Development Census

      Like the Census for adults, this looks at all Australian children entering school. It compares your child’s health, education and social outcomes in local communities, as well as across the country.

      National Assessment Program for Literacy and Numeracy

      NAPLAN is a test of numeracy (e.g. math) and literacy (e.g. reading and writing). It is done each year for all children in grades 3, 5, 7, and 9.

      GenV information collected:

      • School health check

      School health check

      Once GenV kids have started school, we’d like to do a school health check. This might include assessments and other tests.