More about GenV for parents

What kinds of data does GenV access with my permission and why?

GenV aims to keep things safe and easy for families. Once you join GenV, our work will mostly happen in the background. When we have your consent, we will link to information that is collected by services you already use, like health and education. 

With this very complete picture of health, development and wellbeing, researchers can then find answers to complex questions faster than we can today.

Over time, we hope to access service and administrative data from many sources. Data sources and how to access them change over time, so we can’t list them all when you join GenV.

GenV is committed to ensuring personal information remains secure and private. Each year, this website will show the data sources GenV accesses, so you always know. You can contact us with questions or concerns, or if you want to change your permissions.

Examples of the kinds of data sources include:

• Physical and mental health: eg Medicare, hospital records, copies of digital images and traces like ultrasounds, information collected about your pregnancy, test results, use of services like primary care, emergency and mental health, and specialist appointments. Why? People’s quality of life at every age depends on their physical and mental health, the services they do or don’t receive, and how services vary from place to place.
• Education: eg NAPLAN (national literacy and numeracy assessments, if your child takes part), child care, kindergarten, school and after school care attendance, and higher education. Why? People’s life chances and economic wellbeing depend on their educational opportunities.
• Social: eg National Disability Insurance Scheme, Centrelink, justice, housing, child protection and Births, Deaths and Marriages. Why? People need to feel safe and supported to flourish. But many people live with life stresses – like disabilities, language barriers, poverty, financial stress, bullying, crime – that affect their own or others’ wellbeing. These issues tend to be hidden, making it very hard to find solutions. GenV hopes to change this.
• Neighbourhoods: Information about the neighbourhoods where you spend your time, like childcare and school locations, air and smoke pollution, road traffic, transport, green space, waterways, amenities, noise, density, climate, and safety. Why? Our natural and built environments affect people’s health and wellbeing at every stage of life – but how this works isn’t well understood, because most large studies don’t include this information.
• Unique identifier numbers from the services you and your child use: eg Unit Record Number (URN), Medicare, student numbers. Why? In order for GenV to access and link data sources, participants must be matched to their records. Sometimes unique identifier numbers are needed to ensure faster and more accurate matching.

What samples does GenV access and store?

When you join GenV you give permission to store leftover clinical samples for later research to help others. For example, your doctor or midwife may ask for tests on your blood or urine. Leftover samples are usually stored for a short period of time and then destroyed – with your permission, GenV can save these.

Samples include:

• The blood tests you may have had early in pregnancy to test for certain conditions Read more about the 10 week screen here.
• 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. Read more about the newborn screening card here.
• Other test samples you may have given during pregnancy, and
• Other samples you or your child may give as part of future clinical tests.

Each year, this website will show the types of samples GenV accesses, so you always know. You can contact us with questions or concerns, or if you want to change your permissions.

We may also ask you to give samples directly to GenV, like the cheek swab and nappy swab. You can say no to any of these, and still take part in GenV.

What is the 10 week screen?

Many women have a screening blood test around 10 weeks of pregnancy, known as “Maternal Serum Screening” or the “Non-Invasive Prenatal Test”. It screens pregnancy for serious health conditions. You can find out more about this test at the Victoria Clinical Genetics Services (VCGS) website: https://www.vcgs.org.au/tests/maternal-serum-screening

https://www.vcgs.org.au/tests/perceptnipt

With your permission, GenV accesses and stores the leftover sample from this test. It can be used for research questions about early pregnancy.

What is the newborn screening card?

One of the samples GenV would like to store is a small piece from the newborn screening card. This is the ‘heel prick’ blood test done soon after birth to screen for rare and serious, but treatable, conditions. You can find out more about this at the Victorian Clinical Genetics Services (VCGS) website: https://www.vcgs.org.au/tests/newborn-bloodspot-screening

The sample can be used over many years for different kinds of research. When people join GenV, they can decide whether their samples can be used for genetic research. For more information see Why is GenV interested in genes?

What is a saliva swab and how is it used?

We may ask you to give samples directly to GenV, like a saliva swab.  The saliva swab is like a cotton bud that you gently wipe on the inside of your cheek to collect a sample of saliva. . The swab then goes into a small tube.

A saliva swab can be used for different kinds of biological research. At the moment, it is mainly used for genetic research. It may also detect things like chemicals and bacteria in the body. In the future, new technology might allow for other kinds of tests.

When people join GenV, they can decide whether to give samples and if they can be used for genetic research. For more information see Why is GenV interested in genes?

What is the nappy swab and how is it used?

We may ask you to give samples directly to GenV, like the nappy swab. The nappy swab collects a small sample of stool (poo) from your child’s nappy. You use a dry swab like a cotton bud to take a small amount of poo from a dirty nappy when your baby is about 7 days old and again when they are around 2 years of age. You seal the swab in a tube and post it to GenV.

Nappy swab samples can be used for different kinds of biological research. At the moment, it is mainly used for microbiome research. This research can look at how gut bacteria function and how they affect health. In the future, new technology might allow for other kinds of tests.

What is the breastmilk sample and how is it used?

We may ask you to give samples directly to GenV, such as breastmilk (if you are breastfeeding or expressing). You collect about a teaspoon of breastmilk when your baby is about 7 days old or at any time after that.  You can choose to express directly into the tube, or you can use a clean breast pump or container instead – then pour the milk into the tube. After you have collected your sample, you seal the tube in a bag and post it to GenV.

This breastmilk sample supports research into child and maternal health and nutrition. This includes research to understand patterns associated with low milk supply in mothers, as well as the links between breast milk composition to child and maternal health.

Why is GenV interested in genes?

By looking at how genes and biology affect health and wellbeing in GenV, researchers can make important discoveries for children and adults.

Every person has about 23,000 genes. These are passed down from parents to children – you get half from your mother and half from your father. Our genes are made from DNA that contains all the information that makes us what we are. This includes eye colour, blood type, and height.

Some health conditions are caused by changes in just one or two genes. However, most conditions involve small differences in many genes. By studying genes, researchers may be able to understand conditions better, including how conditions and risk factors are passed on from parents to children. It will also help us understand why some people have certain characteristics and others do not.

Research from other studies of genes has led to important discoveries. For example, the conditions on the newborn screening card (like cystic fibrosis) can now be treated before babies get sick. There are still many discoveries to be made.

We will work with Aboriginal and Torres Strait Islander peoples to develop guidance and governance for use of samples.

What kinds of health and development measures will GenV send us?

Once you join GenV we will contact you about four times per year. At each contact, we may ask for short updates on how you and your child are going – like physical and mental health, language and reasoning, and quality of life. These updates change as you and your child grow older. They include things like:

• changes since your last update, like moving house or being diagnosed with a condition
• short health and development questions
• activities like memory games to play, photos to take or videos of how your child walks

These measures are as short and fun as possible. At the end of each measure, we will give you feedback if possible.

You can do all of these on your phone, computer or tablet. If this isn’t possible, we try to make other arrangements. You decide each time whether to complete them. You can take part at a time that suits you.

How does GenV work with other studies?

Parents and children who are in GenV can also take part in studies testing new approaches to prevent, predict and treat important issues. Researchers may invite you or your child to join a new study, and combine its information with GenV data. Doing this can cut down cost, effort and doubling up. It also increases the value of studies. For example, GenV data could let a study look at a wider range of impacts of a new treatment over a longer period of time.

All studies working with GenV must have approval from an ethics committee. If you are invited into studies working with GenV, you can decide each time if you want to take part.

See the studies GenV is currently collaborating with here.

What other assessments might GenV invite us to do?

Most of GenV’s data comes from existing records or brief contacts GenV makes with you by phone or email. However, some assessments need special equipment or trained people. We hope to visit all GenV children when they are older, for example when they start school.  This depends on funding and what new technology develops. We might ask to measure things like fitness, lung health, hearing, or how children spend their time. We would give you feedback where possible. We will tell you what is offered closer to the time. You can decide whether to take part.

How do services help GenV to collect information from us?

Most of GenV’s data comes from existing records or brief contacts GenV makes with you by phone or email. However, some assessments need special equipment or trained people. Services may help GenV with this by adding short assessments to your normal visits. For example, your child’s nurse might offer an extra vision test. These can help the services support you and your child, as well as helping GenV collect important information.

Sometimes you might move house or change your contact details. Services may be able to update GenV, including with your unique identifier numbers, so we can stay in touch with you.

To make sure they have the right person, GenV will tell the services your basic personal information (eg your name, gender and date of birth). GenV will also show the services your consent to access this information.

This happens under strict rules using secure processes to protect your privacy. We do not share your research data with them.

How do I leave GenV?

You can leave GenV at any time. If you withdraw, you can choose between several options for how we contact you and use data relating to you. For example:

No further contact: GenV stops future contacts with you. This lets researchers keep using and accessing data and samples in the background.

No further new data: GenV stops future contact with you and all future data collection. This lets researchers keep using your existing data and samples.

No further use of any data: GenV stops future contact, data collection, and any further release if existing data or samples. However, we won’t be able to stop use of data already released for analysis before you withdrew.

Changing your GenV involvement, withdrawing, or discussing your options is easy. Just contact us by phone, email, or on the GenV website.

Can I join GenV later?

Most parents joined GenV shortly after their child was born. But if your child was born between 4 October 2021 and 3 October 2023, and they live in Victoria, you can join at any time. This includes families who move to Victoria after their child was born.

Please complete this form to let us know you want to join GenV.

How does my child stay involved with GenV as they become an adult?

You give consent for your child to join GenV when they are a baby. When they grow up, they will have the opportunity to continue to take part. This might be at an assessment or during a survey when they are around 14 to 18 years old. To make sure we can get in touch with you as your child grows up, contact us to let us know if your details change.

How will our data be kept safe and secure?

GenV is committed to ensuring your personal information remains secure and private.   

The way we look after your information is based on best-practice worldwide. We store all information in secure environments and perform regular security testing. We apply layers of security controls to protect your data including (but not limited to) regular training and the use of standard operating procedures, secure access controls, data encryption, security monitoring, application of regular security updates, risk and security reviews, independent security testing, and network security protection.

Our use of data is bound by Australian and Victorian privacy laws. To see our Privacy Collection Notice and MCRI’s Privacy Policy, visit www.genv.org.au/privacy.

Researchers need approval to use GenV’s samples and data. They can only use samples and data for research that aims to improve health, development, or wellbeing.

GenV has strict rules to review data users and their proposed research to ensure they are qualified to use the data. They cannot access personal details like names.

You always 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 at any time by contacting GenV. 

We also protect your information with the Five Safes Framework. This is a common and strong framework for protecting your privacy that has been adopted by agencies world-wide, including the Australian Bureau of Statistics (ABS).

How does GenV handle our personal information?

Personal information includes your name and contact information. It is different from your research information such as health records. All research studies need to hold some personal information. We can only run GenV by staying in touch with our participants. For example, we will send you updates, tell you about studies working with GenV, and send invitations to complete short measures about how your child is going. We also use personal information when we access other datasets, to be sure we are matching to the right person.

Staying in Touch

When we send SMS and emails, we use the best and most secure platforms available. The platform works by holding minimum contact information (like a phone number to send an SMS) for a short period of time, after which the information is deleted. This information is not linked to any of your research information. Our website will show the platforms we have used.

Accessing Existing Data

We also use personal information when we access existing data. We do this using authorised data matching centres. To be sure we are matching to the right person, we need to temporarily give them some personal information like names and date of birth. These centres have strict security measures and keep personal information separate to other data at all times.

GenV has many strong measures to ensure your information is stored in a secure and safe way, and kept confidential. You can read about these here.

How does GenV take care of information that could identify participants?

GenV takes extra care with information that could give hints about who is a part of GenV, like locations, images or genetic data. For example, when we extract characteristics relating to addresses (like pollution) or images (like measurements), they are processed in large numbers on computers isolated from all other data sources. Only the extracted characteristics can be combined with other data, not the address or image itself.

How does GenV approve data users?

GenV has strict rules to review data users and their proposed research. GenV carefully assesses researchers, their projects, and their organisation following the Five Safes Framework. This framework uses five separate approaches to protect your privacy. All of the following must be ‘safe’:

1. Safe People
2. Safe Projects
3. Safe Settings
4. Safe Data
5. Safe Outputs

This framework is widely used by other large studies. It is also used by national organisations such as the Australian Bureau of Statistics (ABS) and many other government agencies.

For data users to be approved by GenV, their research must also:

• Aim to improve the health, development, or wellbeing of children and adults.
• Use samples or data without any personally identifying details – so they don’t know they belong to you.

How does GenV know I’ve had a baby?

GenV team members will be at maternity services 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 details from VIHSP to identify and locate you and your child in hospital (ie mother’s name, child’s name, child’s date of birth, birth order (in the case of multiple births), VIHSP ID number and mother’s and child’s location. If we miss you in hospital, we may receive your contact details from VIHSP so we can contact you at home (ie phone, email, address). We won’t have access to any other health information about you or your child from VIHSP.

How does GenV use Unit Record Numbers (URNs)?

All hospital patients are given a unique number to help keep track of their hospital records. This is a type of identifier called a Unit Record Number (URN). Your URN is different at each hospital or group of hospitals you attend.  

When you joined GenV, you gave us permission to access and join yours and your child’s existing records, including hospital records and samples. This is so we can collect the information researchers need to answer important questions about health, wellbeing and development. 

To do this, we need a way to match participants to their records. This is called data linkage. Often we use someone’s name or other details to do data linkage. But sometimes these details are not enough and we cannot make a match (e.g. if someone has the same name as you or you changed your name). Because URNs are unique, using them makes matching to records and samples faster and more accurate. 

How does GenV collect and store URNs? 

We might collect your and/or your child’s URN from you, from your hospital, or from other services or third parties that also store URNs. We protect your URNs in the same way as other personal information, including storing it in secure systems. URNs are only used for data and sample linkage. They are not shared with users who access data for research. 

Does GenV collect other identifiers?

GenV might collect of other types of identifiers for data linkage, like Medicare number and Individual Healthcare Identifier (IHI). IHI is an Australia-wide unique number used by some health services including the My Health Record system. We don’t collect these yet, but we might in the future.