Be part of research about genes
Here you can find a copy of the leaflet given by your interviewer about being part of research about genes.
Taking your child’s saliva sample
Please read our instruction booklet below to find step-by-step instructions on taking your child’s saliva sample. You can also watch an instruction video here.
Taking your own saliva sample
Please read our instruction booklet below to find step-by-step instructions on taking your own saliva sample. You can also watch an instruction video here.
What is DNA and why study it?
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 will provide 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 will also be one of the only studies of its kind to collect samples from biological mothers, fathers and children. Doing this when children are babies will mean 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 will make 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 will allow 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.
As some of the parents who take part in Generation New Era will not be biologically related to the study child, the interviewer will ask some questions about this to establish who is eligible to give a sample.
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 will only be asking biological parents if they would like to give saliva samples. Your interviewer will ask you some questions during the interview to understand whether you are your child’s biological parent.
Yes. If you do not know whether you are your child’s biological parent, your interviewer will still ask if you would like to provide a sample. However, we will not feedback to any parent who has given a sample whether they, or their child’s other parent, are the biological parent of the child.
If your child’s donor is their legal parent and lives with either yourself or your child’s other legal parent, we will ask them if they would like to provide a sample. If your child’s donor is not their legal parent, we will not ask them if they would like to provide a sample.
Providing a saliva sample
No. Whether you or your child provide a saliva sample is entirely up to you. Samples will only be collected from babies with permission from a parent, and although we only require one parent to agree to this, you may wish to discuss this decision with your child’s other parent.
Even if you do 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?’ If you decide not to give a sample, you can still take part in the interview.
Yes. Regardless of whether you or your child give a saliva sample, you can still take part in the interview.
Samples will only be collected from babies with permission from a parent. This permission can only be given by parents with legal parental responsibility for their child, and where the baby is living with them as their main household. We only require one parent to agree to this. However, you may wish to discuss this decision with your child’s other parent.
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. Your interviewer will check that parents have legal parental responsibility before asking whether they agree to collect a sample from their baby.
Parents will be asked to take the sample from the baby. You will be asked to use a special sterile swab to collect a sample from your child. The interviewer will show you a video and give you instructions on how to do this.
The swab will need to be brushed lightly inside your child’s mouth on their gums. It does not hurt, and will take less than 5 minutes.
The interviewer is not allowed to take the sample. This must always be done by a parent or other adult with appropriate responsibility for the child. The interviewer will show you a video and give you instructions on how to do this. Both of these can be found at the top of this page.
No, the interviewer does not need to be present for this, though where possible we would like you to take the sample when the interviewer is visiting the household in order that they can help you to make sure the sample is good quality and is collected as accurately as possible. They will also be able to package the sample for you and put it in the post to the lab. However, if this is not possible, for example because the baby is asleep or with another family member, the interviewer can leave the sample collection kit with you so you can complete it at another time. The interviewer will then arrange to either come back to collect the sample or ask you to post it back to the lab yourself, and provide information about how to do this.
The swab will be brushed lightly on the inside of your child’s mouth on their gums. It will not hurt them. If your child is distressed or doesn’t co-operate with the process, you do not have to complete the sample. The interviewer will leave you with another swab so you can try at another time. The interviewer will then arrange to either come back to collect the sample or ask you to post it back to the lab yourself, and provide information about how to do this.
If your baby isn’t well at the time of the interview, the interviewer can leave the swab with you for you to complete your child’s sample once they feel better. The interviewer will then arrange to either come back to collect the sample or ask you to post it back to the lab yourself, and provide information about how to do this.
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.
The interviewer will show you a video <link> and give you instructions <link> about how to take a saliva sample. You will be asked to spit your saliva into a small container, which the interviewer will provide. It is very easy and can be done in private. About half a teaspoon of saliva is needed. This typically takes about 5 minutes. There is no risk of harm to you or others when giving a saliva sample.
the interviewer when they visit the household if this is convenient. You can also take the saliva sample yourself at a time that is more convenient for you. The interviewer will provide a sample collection kit for you to do this. You can either post back the sample yourself or the interviewer will arrange a time to pick it up from you.
After providing a sample
The saliva samples will be sent to the University of Bristol which is licensed by the Human Tissue Authority.
A sample of DNA will be extracted and stored securely and anonymously for research about genes in the future.
The saliva samples will be destroyed once the DNA sample has been 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 will not be 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.
You can contact Ipsos using the details below:
- 0800 151 0610 (calls from landlines are free but costs from mobile phones may vary, please check with your provider)
More information about privacy and confidentiality is available on the Generation New Era website.
If you’d like to read the materials or look at the instruction video you can do so at the top of this page.