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What information is collected?

If you join GenV, most of the information we use is data that services already collect for you and your child, with small amounts of additional information from time to time and optional samples.

The process is designed to be as easy as possible for you and your child while helping to create a complete picture.

GenV aims to bring together data and samples that already exist in other places. These include:

Information that services already collect for you and your child as standard practice

Information that services already collect for you and your child as standard practice

This includes information from before your baby was born and in the future: from your and your child’s physical and, mental health, education and social records and services. With your permission, GenV can access this from government departments, from schools and kindergartens, and from hospitals, doctors and other providers.

  • Physical and mental health: examples include Medicare, hospital records, copies of digital scans like ultrasounds, information collected about your pregnancy.
  • Education: examples include NAPLAN.
  • Social: examples include National Disability Insurance Scheme, child care support/welfare.
Information related to your neighbourhood

Information related to your neighbourhood

This includes information about where you spend your time, like air pollution rates and childcare services near your home.

Samples collected from you

Samples collected from you

This includes before your baby was born and from you or your baby in the future. When you have a blood or urine test, or a swab, the left-over sample is often stored for some months or years. With your permission, we transfer these to GenV and look after them carefully. The samples can then be used in research to benefit many families.

  • The screening blood test you may have had at around 10-12 weeks of pregnancy – testing your baby for certain conditions.
  • Your baby’s newborn screening card (heel prick) – checking for rare conditions that can be treated. If you were born in Australia, we’d also like to access your own card if one exists.
  • Other routine samples you may have given during pregnancy, and samples you or your child may give going forward.
Information provided by you directly

Information provided by you directly

We know parents are the experts when it comes to their child, so we want to hear from parents too, particularly in areas where health and research information normally doesn’t get collected.

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.

These will be optional but valuable contributions and helps build a more complete image about the health, development and wellbeing of you and your child.