Giving a saliva sample

Why do you want to take my DNA?

There are few studies in the world like Next Steps, 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, Next Steps can paint a fuller picture of your generation.

To thank you for contribution, we will provide you with an additional £10 voucher when we receive your saliva sample.

How are saliva samples helpful to the study, and to society as a whole?

DNA is the set of instructions for how our bodies are put together. Our DNA can determine whether we develop certain health conditions, but our behaviour, housing, finances and other factors matter too. 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 Next Steps have already helped improve the care given to people with common diseases.

One of the other studies we manage, which is following people born in 1958, collected DNA from its study members in 2002-2004. Their contribution has led to historic scientific discoveries, and has been part of the evidence base for new treatments for common conditions like diabetes, bipolar disorder, and inflammatory diseases.

What is a gene and DNA?

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 we 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.

Do I have to provide a saliva sample?

No. Whether you provide a saliva sample is entirely up to you. 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. If you decide not to give a sample, this decision will not in any way affect your ability to continue to participate in Next Steps. It will not affect any NHS treatment you receive if you do not take part.

If after receiving your saliva collection kit, you decide you do not want to take part, please throw away the kit.

Where and how are the DNA samples kept?

Samples will be stored in a laboratory at the University of Bristol which is licensed by the Human Tissue Authority. Access to the laboratory is restricted to authorised personnel. The sample will be anonymised and the laboratory will not have access to any of your personal information.

Will I see the results of any genetic tests?

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. As such, we will not routinely feed back your individual results, but we will share the broader findings from the research with all study members, in our regular mailings and on our website.

Can you share the DNA with my doctor?

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 Next Steps.

Who will have access to my DNA and genetic data?

The stored DNA samples will only be used by researchers. We have a strict data access policy for your samples, and only give permission to researchers who can demonstrate that their work is ethical and of scientific and societal benefit.

We may grant approval to research by the commercial sector, for example a healthcare organisation testing new treatments, but we will not sell or make any profit from the samples you donate.

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.

Can my DNA be used by lawyers or insurance companies?

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

Could my DNA be used for cloning humans?

Next Steps 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 Next Steps, will not allow the samples for human cloning.

What if I change my mind?

You can withdraw your consent for the use of your sample at any time, without giving a reason, by writing to us at:

Next Steps
Centre for Longitudinal Studies
UCL Social Research Institute
20 Bedford Way

Or by emailing us at:

We will then inform the laboratory and the stocks of your samples will be destroyed.