Giving a saliva sample

Why do you want to take my DNA?

With your permission we would like to extract and store DNA from your saliva to use in future research.  This will allow us to see whether you have particular genes. To thank you for contribution, we will provide you with an additional voucher after we receive your saliva sample.

Studying the relative importance of genes and other factors helps researchers to understand differences in people’s development, health, behaviour, and later life outcomes.

Current research suggests that an increasing number of illnesses have a genetic element, such as cancer, diabetes, asthma and certain heart conditions. Looking at the genes from a large number of people combined with all the other information we collected about you, will help researchers to identify which genes are linked to certain conditions. This will help with understanding who is most at risk, which may in turn lead to improved diagnosis, treatment and disease prevention.

DNA collected from participants in some of the other longitudinal studies run at the Centre for Longitudinal Studies has already led to important breakthroughs in our understanding of a number of common medical conditions including diabetes and coronary heart disease.

 

What is a gene/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.

 

Do I have to provide a saliva sample for DNA extraction?

No. Whether you provide a saliva sample is entirely up to you. Even if you do decide to take part, 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?

If you consent to us extracting DNA from your saliva sample, we will not be able to provide routine feedback of the results of genetic testing. Tests done on your DNA are not the same as clinical genetic tests and cannot be used for diagnosis. If, however, through the course of the research we found something that we think could indicate a preventable medical issue, we would attempt to contact you and advise you to consult with a medical professional.

 

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?

Your DNA and resulting data will be used for research purposes only. It could be used by researchers who work in the commercial sector and work outside of the UK.

We will not sell or make any profit from the samples you donate. However, if researchers need samples to be sent to another laboratory then a charge may be made to cover the cost of transportation.

Researchers who want to use your DNA will have to apply for permission to the Centre for Longitudinal Studies (CLS), which oversees Next Steps and access to the samples and resulting data.

 

Can my DNA be used by lawyers or insurance companies?

No. Your DNA will be used for research purposes only.

 

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 organisation that funds this research, the UCL Social Research Institute, and the committee which oversees access to the DNA for research, do not allow 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
London
WC1H 0AL

Or by emailing us at: nextsteps@ucl.ac.uk

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