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Frequently asked questions

Why GenV?

Why GenV?

GenV is a state-wide research program. For the first time, it will give a complete picture of the health and wellbeing of a whole generation.

All babies born in Victoria during 2021 and 2022, and their parents, are invited to take part. We want to include children and parents from all walks of life. Every family matters – including yours.

GenV combines information you provide with data already collected by other services. This means it takes very little of your time. Future research can then find answers to complex health and wellbeing questions faster than we can today.

We hope GenV will help to prevent, predict and treat the issues facing children and parents today. We want to see less problems like preterm birth, allergies, mental illness for everyone.

By being part of GenV, you can help create a better future for all families – now and tomorrow.

What is GenV?

What is GenV?

GenV is the largest childhood research project ever in Australia.  It is painting a picture of how children grow and develop, how people age, and how health changes across generations. It creates the building blocks to help researchers, communities and policy makers to improve health and wellbeing together. We hope it leads to better and safer care, and answers some of the most important questions facing our children and parents. By the end of 2022, we will have invited over 170,000 babies and their parents across Victoria into GenV.

Who is conducting GenV?

Who is conducting GenV?

The GenV team members who will invite you to join GenV come from a variety of backgrounds. They typically have experience in research and/or maternity and other health care settings. All are trained in research, privacy and confidentiality to ensure all participant information is handled respectfully and securely.

Who is funding GenV?

Who is funding GenV?

GenV is funded by the Paul Ramsay Foundation, the Royal Children’s Hospital Foundation and the Victorian Government. You can read more about our supporters and partners here.

What does GenV involve?

What does GenV involve?

If you decide to join, we collect a small amount of information and swabs from you and your child when you sign up to GenV, and then as your child grows up. Then, with your permission, we add information and samples that services already collect in normal practice. We put this information in a secure database that can be used in future research. Results will improve how we predict, prevent and treat problems. They will also help policy makers make good decisions to support Victorian families.

This means that GenV takes very little effort from you, but creates meaningful change for families. We hope to study family health and wellbeing over many years.

You can read more about what GenV involves for you and your child in the Parent/Guardian Information Statement.

How do I join GenV?

How do I join GenV?

A member of the GenV team visits or contacts you soon after your baby is born – usually in the hospital. The visit takes around 15-20 minutes. We explain the project, and ask if you are willing to take part with your baby. If possible, we also invite your baby’s other parent. To take part in GenV, you’ll need to need to sign a consent form.

All babies born in Victoria during 2021 and 2022, and their parents, will be invited to take part. In 2020, GenV is starting in a number of hospitals before we go out to the whole state. If you are having your baby at one of these first GenV hospitals, you will be invited to take part.

How will you know I’ve had a baby?

How will you know I’ve had a baby?

GenV team members will be at maternity service across Victoria. Each day they will find out about new births so they know who to invite to join GenV.

GenV finds out about new births from the Victorian Infant Hearing Screening Program (VIHSP). VIHSP is a state-wide service provided by the Royal Children’s Hospital. GenV only receives enough information from VIHSP to identify and locate you and your baby in the hospital. We won’t have access to any other health information about you or your baby from VIHSP. You can read more about the information we receive from VIHSP here.

What kinds of information will GenV access?

What kinds of information will GenV access?

Some examples of information GenV will access with your permission are:

  • Physical and mental health: eg Medicare, hospital records, copies of digital scans like ultrasounds, information collected about your pregnancy
  • Education: eg NAPLAN (national literacy and numeracy assessments at school, if your child takes part)
  • Social: eg National Disability Insurance Scheme, child care support/welfare
  • Information about the neighbourhoods where you spend your time: eg childcare service locations from the government and air pollution from the environmental protection agency.

Each year, we will list the data sources GenV accesses on this website. This means you always know what we are accessing, and can contact us if you have any questions or concerns.

What kinds of routine samples will GenV access?

What kinds of routine samples will GenV access?

Some examples of routine samples GenV will access with your permission are:

  • The screening blood test you may have had at around 10-12 weeks of pregnancy – testing your baby for certain conditions
  • The blood sample from your baby’s newborn screening card (heel prick) – checking for rare conditions that can be treated. If you were born in Australia, we would 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.

You can find out more about these samples in the Parent/Guardian Information Statement.

Each year, we will list the samples GenV accesses on this website. This means you always know what we are accessing, and can contact us if you have any questions or concerns.

How often will I be contacted?

How often will I be contacted?

Once you join GenV we will contact you about four times a year. GenV may ask for updates on how you and your child are going – like short surveys and health and development assessments. These take between 3 and 20 minutes – we know how valuable your time is. You decide each time whether to complete them. You can complete them at a time that suits you.

What are the benefits of joining GenV?

What are the benefits of joining GenV?

GenV may or may not directly benefit you or your child.

We can give on-the-spot feedback when you or your child complete surveys or assessments. You may find this helpful. You can read more about feedback from GenV in the Parent/Guardian Information Statement.

Over time, GenV will report on many issues relevant to children and parents in general. We hope that GenV will help improve the lives of many children and parents. We will share these overall results with you, and hope they are useful to you.

Do we have to take part?

Do we have to take part?

No. It’s up to you. Whatever you decide, it will not affect the care you or your child receive. However, the more people that take part, the more valuable GenV becomes.

Can I change my mind?

Can I change my mind?

Yes, you can change your mind at any time. Just contact us here.

How do I find out the results of GenV?

How do I find out the results of GenV?

We encourage GenV researchers to report findings widely – this is how new knowledge gets put into practice. GenV will put summaries on its website. We hope this is helpful for parents. Only group results are published – never individual results.

Are there risks for joining GenV?

Are there risks for joining GenV?

Joining GenV should not cause any harm or affect the care that you or your child receive. Like all databases, there is a small risk of data privacy being breached. GenV has strict and secure systems to prevent this and protect your privacy.

You can read more about how GenV protects your privacy in the Parent/Guardian Information Statement.

We understand that joining GenV takes trust. Trust by parents like you has led to many discoveries that help children and adults today, in areas like infection and cancer. We will work hard to repay your trust.

How will GenV look after my information?

How will GenV look after my information?

GenV has many strong measures to ensure your information is stored in a secure and safe way, and kept confidential.

You can read more about how GenV looks after your information here and in the Parent/Guardian Information Statement.

You can also read MCRI’s Privacy Policy.

How will GenV’s research data be used?

How will GenV’s research data be used?

GenV combines information you provide with data already collected by other services. We put this information in a secure database that can be used in future research. Researchers can to apply to use GenV’s data. GenV only shares data with those working to improve the health, wellbeing and other outcomes of children and adults. Results can help to improve how we predict, prevent and treat problems. They will also help policy makers make good decisions to support Victorian families.

You can read more about how your data is used in the Parent/Guardian Information Statement.

How does GenV use my personal information?

How does GenV use my personal information?

Personal information includes your name and contact information. It is different, and kept separate, from your research information such as health records. We use your personal information to run GenV. This is how we stay in touch with you, send you updates and invitations. We also use personal information when we access other datasets, to be sure we are matching to the right person. You have the right to access and correct the personal information we collect and store about you and your child under privacy laws. You can do this by contacting GenV.

You can read more about how GenV uses your personal information in the Parent/Guardian Information Statement.

You can also read MCRI’s Privacy Policy.

More questions? Any concerns?

More questions? Any concerns?

If you have more questions or any concerns, you can contact a member of GenV here.

You can also speak to someone independent of the project about any concerns or complaints, how it’s conducted, or your or your child’s rights as a participant. Please contact the Director of Research Development & Ethics at The Royal Children’s Hospital Melbourne on (03) 9345 5044 or rch.ethics@rch.org.au

If you have any concerns about the handling of your health information, you can contact the Health Complaints Commissioner on 1300 582 113.