Transforming healthcare together

Discover

About

Discover Me is a nationwide research study looking at how health and genetic information can allow us to better understand disease.

By collecting this information from thousands of people, Discover Me aims to help us find out why diseases may affect some people more than others. This could help transform healthcare.

As part of Discover Me, you can learn more about your own health and ancestry, supporting you and your GP to make better decisions about your health and care.

FAQs

What is the Discover Me study trying to do?

Discover Me is a nationwide research study that aims to analyse health and genetic information on thousands of people. The research aims to improve our understanding of many different diseases, and to find ways to help GP practices improve patient care.

Why study health and genetic information together? Why is this important?

Genetic information is the information held in our DNA that is inherited across generations. By connecting this to information on health, we can study diseases and conditions in much more detail than if we only looked at health or genetic information alone. This provides us opportunities to better understand disease, including: 

  • Why some diseases affect some people more than others
  • Why disease progresses differently in different people
  • How to better prevent, manage and diagnose diseases

Studying health and genetic information together in this way may allow us to find new treatments or improve existing treatments for conditions such as cancer and diabetes, and improve the health of future generations.

Who is Omnigen?

Omnigen Biodata (Omnigen) is a Research and Development company registered in the UK (company number 10565653) and co-founded by senior academics at the University of Cambridge. Omnigen is running the Discover Me study with GP practices across the UK.

Who has approved this study?

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and approved by the North East – Tyne & Wear South Research Ethics Committee (study reference 19/NE/0020).

Can I take part in this study?

You can take part if you are aged 18 or over, able to consent for yourself, and your GP practice is in the study.

I am generally healthy. Why should I take part?

It is important that people at all levels of health join the study, as this helps our understanding of health and disease. We would like you to take part whether you are in good health or have health problems.

What will I have to do as part of this study?

As part of this study, you would:

  • Enrol, which includes providing some details about yourself, and a saliva or mouth swab sample.
  • Allow information from your health and care records and other sources to be collected and used alongside your sample.
  • Agree to be contacted in the future by the research team about this study and other new research studies. 
  • Choose whether to receive information on your genetic ancestry from your sample and some of your health information from your health and care records.

I’m interested in participating. What do I have to do to enrol?

You can enrol into Discover Me at your GP practice. To enrol, you would:

  • View a short video and read an information sheet to learn more about the study, and have a chance to ask the research team any questions.
  • Answer some questions about the study to check your understanding of what you will be agreeing to as part of this study.
  • Fill in a consent form to show that you have agreed to join the study. 
  • Give some simple information about yourself including your date of birth and contact details, and check this information with your GP practice to make sure you can take part.
  • Provide a saliva or mouth swab sample using our collection kit.

Do I have to do anything more after I enrol into the study?

Once the enrolment process is complete, you will not need to do anything further. We will confirm that you have enrolled by text or email, send you a copy of your consent form, and inform your GP practice that you are taking part. You will also be able to collect a copy of your consent form from your GP practice.

Also, as part of this study, you can choose to receive information about:

  • Your ancestry from your saliva or mouth swab sample, and
  • Some of your health information from your health and care records.

You will be able to view this information in a secure online participant portal. We will send you instructions on how to access this portal once you have enrolled.

If you are unable to provide a mobile phone number or email address at this point, we won’t be able to send you instructions for accessing your ancestry results and health information. However, if you are able to provide a mobile phone number or email address in the future, you can then contact us, and we can arrange for you to access your ancestry results and health information.

What do you do once I have enrolled into the study?

We will produce genetic information from the saliva or mouth swab sample that you provide, and follow your health over time by collecting information about you from your health and care records and other sources. We will use your genetic and health information, together with information from thousands of others, to improve our understanding of many different diseases and to identify ways to help GP practices improve care.

What sort of information will you collect about me?

For many years, we will follow the health of everyone who has joined Discover Me. To do this, we will collect information about you for research from your health and care records (for example, from your GP records, hospital records and disease registries). We may also add other information, such as from the census, or on the weather or pollution in your area, which may also affect health. This information may be collected at multiple points after you consent to take part in the study, so we can update the information we hold on you over time. 

How will you use my saliva or mouth swab sample?

The DNA (genetic material) will be extracted from your sample and placed into long-term secure storage. We will read your DNA to produce genetic information, and will use this information to see how genetic differences (inherited differences between families because of ancestry) may help explain how some diseases are caused and how they progress. If you choose, we will also use your DNA to provide you with information on your ancestry.

How long will you hold my information and sample for?

Your information and sample will be securely stored by Omnigen for many years, and possibly indefinitely.

How will you protect my information and samples?

Will you continue to contact me as part of this study?

Yes, we will continue to contact you about activities relating to Discover Me. This may include instructions for accessing your ancestry and health information, a short questionnaire about the information you have received, and general updates about the study or your ancestry and health information.

Will I benefit if this research leads to new treatments, medical tests, and other products or services?

No, you will not benefit financially if this research leads to the development of new treatments, medical tests, or other products and services. However, patients in the future may benefit from such new developments.

What do I get to find out about my information and sample?

Once your information has been collected and your sample has been analysed, you will be able to see your ancestry results (for example, what populations your ancestors belonged to) and some information from your health and care records (for example, your vaccination records or measures such as blood pressure over time) in a secure online participant portal. When enrolling, you can choose whether or not you would like to receive this information.

When can I expect to see my results?

You can expect to see your results about 12 weeks after you enrol into Discover Me. Remember, you will need to provide a mobile phone number or email address if you wish to receive this information.

What can I learn about my ancestry from my results?

From your ancestry results, you will be able to learn about what populations in the world your ancestors belonged to. When you enrol into the study, you can choose whether or not you would like to receive this information. 

What can I learn about my health from my results?

As part of this study, you will be able to access some information from your health and care records. This may include information that you might find interesting or useful for managing your health, such as blood pressure and body mass index (BMI), as well as medications you have taken, and vaccinations you have had. When you enrol into the study, you can choose whether or not you would like to receive this information. 

What if you find out other things about my genes and health from my results? Will I learn about these as well?

Apart from your ancestry, we will not be providing you with other genetic information from this study, as the results are for research purposes only. 

Will the information and the sample I provide be shared?

To make sure that the information and samples collected from the Discover Me study can provide the greatest benefit for society and medical research into human health and disease, we or trusted partner organisations will share your information and sample with other institutions or organisations globally for analysis and further research. These may include research institutions, commercial organisations, universities, GP practices, hospitals, charities, and service providers. 

The people who analyse the information will not be able to identify you, and will not be able to find out your name or contact details. Importantly, only information and samples which do not include your name and other information that directly identifies you will be shared for analysis. When we share your information or samples, we will ensure there are safeguards to keep them secure and private. Where additional research is carried out on your sample, we will not provide the individual results of this research to you, as they are not suitable for making diagnoses.

Will you contact me in the future about participating in new studies?

Yes, we may contact you in the future to see if you would like to join new research studies. These may include surveys or trials of new therapies, and may or may not be related to this study. You might be invited to take part based on your health and/or genetic information collected as part of this study.

If I get asked to participate in new studies, do I have to take part?

Taking part in new studies will be entirely optional, and refusing to take part will not affect your routine care or participation in Discover Me in any way.

How will you protect my information and sample?

We take privacy of your information and samples very seriously. All information which directly identifies you will be held securely, with access restricted to the research team. Your sample will be labelled with a unique code rather than your name, so you cannot be directly identified. Any information or samples shared for analysis with other organisations will not include your name or other information that directly identifies you. Where we share your information or samples, we will ensure there are safeguards to keep them secure and private. Researchers who analyse your samples and information will sign a contract to say that they will not try to find out who you are. You will not be identified personally in any publication or report. We will not allow the police, security services, relatives or lawyers access to your information or sample, unless required to do so by the UK legal courts.

How does this study comply with data protection law?

Omnigen will be using information about you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. 

Because we are using your personal information for research, under data protection law, your rights to access or change your personal information are limited. This is because we need to manage your information in specific ways in order for the research to be reliable and accurate. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can contact us directly if you have any concerns about how we handle your personal information, or you can contact the UK government’s Information Commissioner’s Office. 

You can find out more about how we use your personal information by contacting the research team. 

How can I contact the research team for the Discover Me study?

Once I have enrolled, can I leave the study if I change my mind about taking part?

Yes, you are free to change your mind about participating in Discover Me at any time. You do not have to give a reason, and your decision will not affect your routine medical care in any way. 

Once you let us know that you would like to leave the study, you will be able to choose options for further collection and sharing of information and samples, future contact, and access to your online participant portal (through which you can view your ancestry results and some information from your health and care records). If you decide to withdraw, we will not erase or destroy any information and samples already collected (including your identifiable information) and we will be unable to recall any information and samples that have already been shared for research.

What if I lose my capacity to consent following enrolment?

If you consent to take part in the study, your doctor or relative may later inform the research team if they feel you have lost the capacity to consent to the study; or, we may pick up this information from your health records. If we are aware that you have lost the capacity to consent, we will suspend further information and sample collection, future contact, and access to your online participant portal. Information and samples already collected will continue to be stored (including your identifiable information) and shared for research (including for further research after this study). If you later regain capacity to consent, you ask to participate in the study again if you wish.

What if I change my mind about the results I want to receive?

You can contact the research team if you change your mind about receiving your ancestry results or health information. This includes both if you:

  • No longer want to receive your ancestry results or health information, or
  • Now want to receive your ancestry results or health information.

How can I contact the research team for the Discover Me study?

I enrolled previously, but have now moved GP practices. Can I still take part?

Yes, you can still take part. To do this, you can contact the research team to let them know that you have moved GP practices.

How can I contact the research team for the Discover Me study?

How can I contact the Discover Me research team?

You can contact the research team at: 

Email: discovermeuk@omnigenbiodata.co.uk

Tel: 020 3866 8941
(standard rates from your carrier will apply)

Privacy

Please click here to find out how we use your personal information:

View Privacy Information

Contact

To find out more, please contact the GP practice at which you are registered.

For any other enquiries, or if you are participating in the Discover Me study, please contact the research team by:

Telephone: 020 3866 8941
(standard rates from your carrier will apply)

Email: discovermeuk@omnigenbiodata.co.uk

Post:
FAO Discover Me UK
Omnigen Biodata Ltd
5–7 Portugal Place
Cambridge
CB5 8AF