Are you interested in joining but have some questions you'd like answered first? Take a look at our Frequently Asked Questions (FAQs) here if you'd like to learn more.
We are interested in following families over time for a few reasons.
If you are biologically related to your family, you will share DNA with them. Some illnesses can be passed on in a family through shared DNA. If we have lots of biological relatives in our research we may better understand illnesses which can run in families.
We also welcome families with non-biological relatives to join our research. It is useful to research the health of families who have shared lifestyles, habits or environment but no shared DNA.
Whether we are biologically related to our family or not, our relatives have an important impact on our health and well-being. We would like to follow Scotland’s families over time to better understand health and well-being in Scotland.
Every 10 years the Government asks us to fill out a survey. Each household is asked to complete the survey. The survey asks about everyone in the household’s age, race and occupation, as well as other questions. It is a way for the Government to get a snapshot of who is living in the country at the time. It helps the Government to plan for provisions in the future.
We ask everyone to provide a saliva sample when they join Generation Scotland. It is an important step to joining and is how we get your DNA.
Some people live with medical conditions, or side effects of medications, which can make it difficult to produce saliva. We encourage all new volunteers to attempt to provide a sample. However, if you struggle or believe you can’t provide a sample, please get in touch with us by emailing email@example.com. We would still like you to be involved in Generation Scotland!
In some circumstances there are links between health impacts and sex assigned at birth, so we ask this question. The wording is in line with the Government Equalities Office because you are given a legal sex at birth. Your parents must register this on your birth certificate. The only legally recognised options for sex in the UK are ‘female’ and ‘male’, which is why these are the only options for this question.
We understand there may be concerns for some around this question. Due to this, we offer the option to select ‘prefer not to answer.’ Later in the survey, we also ask about gender as some people don't identify their gender as the sex they were assigned at birth.
If you would like to get involved please read our Volunteer Information Sheet. We have one information sheet for volunteers aged 16 and over, and one for volunteers aged 12-15. These can be found below.
If you are aged 16 or over click the link below to join.
If you are aged 12-15, to take part, you must have a parent or guardian already taking part in Generation Scotland. They will have to agree that you can also take part. The parent or guardian information sheet can be found below
The saliva sample you provide contains your DNA, which researchers will study. This may include ‘Whole Genome Sequencing’, where we read all 6 billion letters of your DNA. This means we can look at which DNA sequences seem to be important in health or disease.
Collecting the sample may be difficult for people who struggle with their grip You may want to ask a friend or relative for assistance to unscrew the saliva collect tube and to place the cap back on.
If you are visually impaired you may find the Be My Eyes app useful:
This app pairs people who are visually impaired with sighted volunteers who can guide you through the collection process.
We will email you when your kit is on the way. If you don't receive your kit within 3 weeks of this email being sent, or if you have any other issues, you can contact us. Details can be found in the link below:
If you lose your kit you can contact us to send a replacement.
If your kit arrives damaged, do not collect your sample. Get in touch with us to let us know. Only collect your sample once we have sent you another kit. Our contact details can be found in the link below:
Due to the nature of this study, we won't feedback information to you about your own data, including your genetic data. If you nominate a relative to take part we will not feedback any information about your relative’s data to you. However, we do keep our website and social media up to date with our latest findings, reports and research at generationscotland.org. We will also send you newsletter every 3 months.
Protecting your data
Any forms containing personal details will be stored in a secure location and kept separate from study data.
Study data and DNA from your sample will be stored in secure buildings, using a unique anonymous identification (ID) code. All data will be kept in a password-protected database and linked by your unique ID code. Saliva (spit) samples will be processed and the DNA stored in a secure lab with your ID code.
Personal details will never be stored with samples or data.
We plan to keep the data and samples, and continue to track health in those who have taken part, for as long as there is public benefit. This will give the project time to gather information for researchers, so they can study how genes, environment and lifestyle influence health over time.
The Generation Scotland team is based at The University of Edinburgh, who is the legal owner of the data and samples collected.
In practice, Generation Scotland will manage the data and samples. If you take part, you will not own your data or samples.
Generation Scotland has security in place to ensure complete anonymity and to protect the information we collect. We'll always make sure that identifying data (e.g. name, address, date of birth) are kept separate from all other information we gather (e.g., your answers to questionnaires, health records, administrative records). Those involved are fully trained to maintain your confidentiality.
Researchers who analyse the data will not be able to identify you. Study data will be stored carefully in secure buildings, using a unique anonymous ID code. This code allows researchers to access an anonymous copy of the information they need. They will not be able to use your ID to identify you.
In your sample kit, there's a barcode on the saliva sample tube, which has letters and numbers underneath it. We have linked this code to your volunteer ID. When you provide your sample, you don’t need to add your name, as this code will be enough. This process makes sure your personal data is protected.
We will email you to let you know your sample kit is on the way and tell you what your code is. It is important that you check this code matches the code on your saliva tube before you provide your sample.
Our research has been reviewed by an independent group of people, called a Research Ethics Committee. They’re here to protect your safety, rights, well-being and dignity. This project was reviewed and given a favourable opinion by the East of Scotland Research Ethics Committee.
If the project is still running and you have not withdrawn your data before you die, we’ll keep it and continue to maintain confidentiality and security.
We plan to look for patterns of health in people who take part in the study. Public Health Scotland holds NHS data including drug prescriptions, hospital admissions and lab tests. We’ll ask your permission to allow them to share details of your past and future health with us.
We’ll securely send the relevant NHS staff your name, address and date of birth, so they can find your records for us. We’ll ask your permission for trained team members to view medical notes for details about your health, which could be useful for research. All information is treated confidentially.
We’ll use records, stored at Register House, to create family trees of yourself and others taking part. This helps the tracking of genes in families. We also use administrative records, such as Education, Department for Work and Pensions (DWP), and tax records as well other types of administrative records.
We will contact you when we link to a new type of administrative record. We’ll let you know what type of record it is, and what type of information it holds. If you withdraw your consent for re-contact we will be unable to let you know this information. We suggest that you check our website, and social media posts for updates. This way, you can still let us know if you want to opt-out of a specific record linkage.
Learn more about how we link to record in this video:
- Video: Data linkages: explore the evolution of healthcare records in research
- Health researchers are increasing looking to data linkage to examine the wider impacts of health. Data linkage is the joining of two or more independent databases that share a variable at an individual record level – for example, someone’s GP record and their hospital record will share a unique ‘NHS number’. This animation created by a multidisciplinary team at the NIHR Maudsley Biomedical Research Centre (BRC) illustrates the process of data linkage and the benefits for researchers. It is hoped that the video can be a useful tool in Patient and Public Involvement and beneficial to other organisations conducting health linkages. If you are interesting in using the animation on your own website please contact: firstname.lastname@example.org
The data we receive will always look slightly different dependent on where the data is coming from. However, it will always be de-identified using an ID number instead of your name. That means the data will never be linked to your personal data like your name or full date of birth.
We won't be accessing your personal file either. Instead we will get lots of volunteer data at once linked to individual ID numbers. It will be sent to us electronically and will look like a spreadsheet, that you might use at work or at home. The image on right is an example of what the data might look like (this is not real data but an example of how it might look).
No, we will not store copies your personal official records. We will get in touch with the people who hold the records we request. They will collect the information requested and send the data over in a big data file. Your data will be linked to an ID number and data points like ‘tax bracket: higher rate’ ‘occupation code 1131 financial manager and directors’ will be attached to that ID number. We will never link your personal data, e.g. your name or full date of birth, to the de-identified data given to us.
Your anonymised information will only be used by researchers who have approval from our access committee. The Access Committee read all access requests and approve or deny them based on their scientific merit. Researchers will also need ethical approval before we will give them data.
This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests.
We will not give access to the following:
- Insurance companies
- Current or future employers
- Police (unless requested to do so by court order)
With your permission, we'll tell your GP that you have taken part. This is to inform them that you are volunteering in medical research.
If you consent to your child taking part, we will contact them and let them know you are taking part and have given us permission to contact them.
We will not tell anyone else that you are taking part in Generation Scotland.
The Generation Scotland data access committee will have authority over access and use of data. All studies must also be approved by an ethics committee. Researchers will only be able to access anonymous information. Once the research is complete, we ask for the results to be returned to us. We can then share the overall results of the research with our volunteers. We do not give volunteers individual results based on their data alone.
Who to contact
If you would like to complain about our handling of your data, you can contact the University’s Data Protection Officer via email at email@example.com or write to:
Data Protection Officer, Governance and Strategic Planning, The University of Edinburgh, Old College, Edinburgh, EH8 9YL Scotland
In order for you to receive any information regarding our projects, it’s essential that we have your up to date information. If you are registered on our secure online portal you can update your details using the ‘personal details’ page.
If you have any difficulties please email us at firstname.lastname@example.org.
It’s important to us that you have all the information you need before you join the study. If you can’t find the answer to your query here, or in our Volunteer Information Sheet, you can contact us. Details can be found in the link below: