Giving a saliva sample

We would like to add genetic information about you and your baby to the study to help understand how genes influence people’s lives and how genes and the environments people experience work together.

There are few studies in the world like Generation New Era, that collect a broad range of information over time to try and understand the whole person. DNA is an important piece of this puzzle. By combining information about genes with the answers to the survey questions, Generation New Era can paint a fuller picture of this new generation of children and parents and what affects their health and development.    

To thank you for your contribution, we gave you an additional £5 voucher for your sample and your baby’s sample. 

DNA (Deoxyribonucleic acid) is the genetic material in every cell of the body including blood, saliva, skin and hair. A gene is a section of DNA that contains the information our bodies need to make chemicals called proteins. In this way, they tell your cells how to function and what characteristics to express, and thus influence what we look like on the outside and how our bodies work on the inside. For example, one gene contains the code to make a protein called insulin, which plays an important role in helping your body control the amount of sugar in your blood.  

Put simply, our DNA is the set of instructions for how our bodies are put together. Genes are the biological way that parents pass some of their characteristics to their children. Everyone (except identical—or monozygotic— twins) has a different set of genes – so they are like our own personal recipe book. 

Our DNA can influence whether we develop certain health conditions, even though our behaviour, housing, finances and other factors matter too. Genes don’t determine what our lives are like, but together with the environments around us, they play an important role. Combining all these different things in one study can help reveal what’s driven by our genes, what isn’t, and how our genes and environment work together.    

Studies like Generation New Era have already helped improve the care given to people with common diseases. One of the earlier birth cohorts in the UK, which is following people born in 1958, collected DNA from its study members in the early 2000s. Their contribution enabled ground-breaking scientific research and discoveries that led to new treatments for common conditions like diabetes, bipolar disorder, and inflammatory diseases. 

By collecting DNA samples from babies at the start of the study, Generation New Era can provide new scientific insights into the relative importance of genes and other factors in relation to children’s growth and development in the early years, and throughout their lives.  

Collecting DNA samples from babies at this age is a first for national studies like this in the UK. In other similar national studies where DNA samples have been collected, this has been done when the study members were teenagers or adults.  

Generation New Era is also one of the only studies of its kind to collect samples from biological mothers, fathers and children. Doing this when children are babies mean that we are able to include as many biological mothers and fathers as possible, including those who do not live with their child’s other parent. This makes the genetic information available for research in Generation New Era as complete and inclusive as possible. 

Children inherit their genes from their biological parents. Analysing DNA from biological parents allows researchers to understand which genes are passed from parent to child, and how parents’ genes influence their children’s lives, as well as their own.   

Each child’s genes come from both their biological mother and biological father, so the value of the genetic information is increased greatly if we are able to look at both biological parents. Genes can have different effects depending on whether they come from the mother or father. DNA from parents will let us explore these differences. This is why – when looking at complex conditions such as asthma, obesity or diabetes – we need to look at DNA from parents as well as children.  

Biological parents are the people whose egg or sperm led to the conception of the child and therefore whose genes have been transmitted to the child.

We only asked biological parents if they would like to give saliva samples.

If a parent did not know if they were the child’s biological parent, they still had the option to provide a sample if they wished. No feedback was given to any parent who gave a sample regarding whether or not they, or their child’s other parent, are the biological parent of the child. 

If a child was conceived using egg and/or sperm donation, donors were only invited to give a sample if they were their child’s legal parent. 

It was entirely up to each parent to decide whether to provide their sample. Samples were only collected from babies with permission from a parent.

Even if you did decide to give a sample, you can change your mind and withdraw your permission for your DNA sample to be used for research at any time without giving a reason. For more information on how to do this, please read the answer to the question ‘what if I change my mind?’.

Samples were only be collected from babies with permission from a parent. This permission could only be given by parents with legal parental responsibility for their child, and where the baby was living with them as their main household. We only require one parent to agree to this.

Legal responsibility describes the legal rights and responsibilities that a parent has by law in relation to their child. Biological and adoptive parents have legal responsibility for their children. Step-parents and other guardians do not have legal responsibility by default, but can acquire legal responsibility through a parental responsibility agreement or a court order, a child arrangements order, or by becoming the child’s legal guardian or special guardian.

Parents were asked to take the sample from the baby. They were asked to use a special sterile swab to collect a sample from their child.

Generation New Era will not inform your child’s other parent whether or not your child has given a sample. It is up to you whether or not you wish to tell them.

Parents were asked to spit your saliva into a small container, which the interviewer provided.

If you took part online, the interviewer could still provide a sample collection kit for you to do when they visited the household. The sample could then be posted back.  

The saliva samples have been sent to the University of Bristol which is licensed by the Human Tissue Authority.

A sample of DNA has been extracted and stored securely and anonymously for research about genes in the future.

The saliva samples were destroyed once the DNA sample was extracted.

We will test the samples to make sure that the collection process has gathered enough saliva that the DNA extraction and storage procedure has successfully produced high-quality DNA samples. Your family’s name and address were not attached to the saliva samples. The laboratory will not have access to any of your personal information.

The DNA samples will be stored securely and anonymously and treated in strict confidence in accordance with the Data Protection Act, the General Data Protection Regulations (GDPR), and the Human Tissue Act. We will use an anonymous identifier to match your genetic information to your study responses. Any researchers using the DNA samples in the future will not have access to your family’s name and address or any other personal details that could identify individuals in the study.

Researchers will only be allowed to use the samples at the specialist storage facility or at another similar laboratory, which may be outside the UK. If researchers need us to send samples to another laboratory, we may charge them for the cost of transportation.

The DNA samples will be used for research purposes only. Qualified researchers will need permission from a special committee with expertise in genetics and overseeing and safeguarding access to the samples. They’ll only be given permission if their research will benefit the public. Researchers from commercial organisations will usually partner with public organisations (e.g. the NHS or universities) except under circumstances of exceptional potential public benefit.

The analysis of DNA is subject to funding, which means any data may not be available for some time.

The tests that will be done on your DNA are for research purposes, and are not the same as clinical genetic tests. The results cannot be used for individual diagnosis. This is because they only pick up common genetic variations that are not directly linked to diseases. Clinical genetic tests use different methods and are designed to detect rarer genes directly linked to disease. As such, we will not feed back your individual results. This is considered ‘best practice’ ethically. However, scientific developments in genetics are happening rapidly and this policy will be regularly reviewed. If you have any concerns about genetic conditions, you are advised to speak to a medical professional.

No, that is not possible. We use a research laboratory and not a clinical or medical laboratory. Your DNA will only be used for research relating to Generation New Era. 

No. The stored DNA samples will only be used by researchers and cannot be accessed by lawyers or insurance companies.

The Home Office and the Police will not be able to access your DNA data without presentation of a court order. Requests in the form of Court Orders will be referred to Generation New Era’s Legal Counsel as promptly as possible, so that all representations may be made to the court, for example to limit the information requested. 

Generation New Era will not use your DNA for cloning humans. The use of human tissue and DNA is strictly controlled. The Centre for Longitudinal Studies, who run Generation New Era, will not allow the samples to be used for human cloning.

No. Generation New Era will not use your DNA for paternity testing. Therefore, we will not feedback to any parent who has given a sample whether or not they, or their child’s other parent, are the biological parent of the child. 

You can change your mind about allowing the use of your child’s DNA until they are an adult, or your DNA, without giving any reasons, by writing to the Centre for Longitudinal Studies (see details below). They will inform the laboratory and your DNA samples will be destroyed. Usually, only the parent who has given permission for their child’s sample to be used is able to withdraw this permission. 

When your child is an adult (or earlier if he or she can demonstrate that he or she is old enough to understand), he or she can withdraw permission for the storage and use of their DNA. They can do this regardless of whether they continue to take part in future surveys for Generation New Era.