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 sample and continue to track the health of those who have taken part, for as long as medical research can 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 Viking Genes team is based at The University of Edinburgh, who’ll be the legal owner of the data and samples collected. In practice, Viking Genes will manage the data and samples, maintaining and building the public good. If you take part, you will not own your data or samples; this will be explained before consent is signed.

Viking Genes has security in place to ensure complete anonymity and to protect the genetic information we collect. We will always ensure that identifying data (e.g. name, address, date of birth, GP name) are kept separate from all other information about genetics. Those involved are fully trained to maintain your confidentiality.

Researchers who analyse the data will not be able to identify any one person. Study data and DNA from your saliva sample 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.

Our research has been reviewed by an independent group of people, called a Research Ethics Committee. They’re here to protect your safety, rights, wellbeing and dignity. This project was reviewed and given a favourable opinion by the South East Scotland Research Ethics Committee of NHS Lothian.

If the project is still running and you have not withdrawn your data and sample before you die, we’ll retain them and continue to maintain confidentiality and security.

We plan to look for patterns of health in people who take part in the study. The Information Services Division (ISD) of NHS Scotland records 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.

Your anonymised information will only be used by researchers who have relevant scientific and ethical approval for research. 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 law)

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. We will not inform anyone else that you have taken part.

The Viking Genes data access committee will have authority over access and use of project data. We will ensure we have a clear management structure and that all projects are covered by the correct ethical approvals. All users will only be able to access anonymous information and will be held to the same high scientific and ethical standards.

Your information will only be used by researchers who have relevant scientific and ethical approval for research. This could include researchers working in other countries or with commercial companies who are looking for new treatments or lab tests.

You’re providing your sample as a gift. You won’t receive any payment for your contribution. The University of Edinburgh and VIKING II operate on a non-profit basis, meaning we won’t sell your data or sample.

Samples may be made available, anonymously, to other research institutions, in the public and private sector, and help researchers make an invention.  If an invention is created from research on your sample, you won’t receive any compensation or payment.

If you would like to complain about our handling of your data, you can contact the University’s Data Protection Officer via email at dpo@ed.ac.uk or write to

Data Protection Officer,

Governance and Strategic Planning,

The University of Edinburgh,

Old College

Edinburgh

EH8 9YL

Scotland