How is the information I give you kept confidential?

Keeping your information secure is our highest priority. There are a number of regulations and policies that the Eating Disorders Genetics Initiative complies with to ensure data is protected and that biological samples are stored correctly.

Storage and work on personal data or biological data will always be in accordance with the current ethical guidelines, and the conditions of the consent you have provided. In the event that ethical guidelines are modified, the project will be further evaluated for ethical approval.

Personal data

Personal data such as contact details and linked clinical and phenotypic data being stored at the NIHR BioResource and will be kept at AIMES, which is GDPR compliant and an ISO27001-certified data centre, specialising in health care data and medical research, based in Liverpool This data will also be shared with King’s College London and will be on secure servers in accordance with the Data Protection Act (DPA) 2018.  Data will not be passed on to any third parties including your doctor, your insurance company or your employer. All data will be used in an anonymised linked format with personal information being accessible only to the recruitment team and clinical staff who have DBS (Disclosure and Barring Service) clearance and are bound to confidentiality by their University/NHS contract. 

Biological samples and genetic data

Biological samples from England will be stored through the NIHR BioResource (REC: 17/EE/0025) in the NIHR National Biosample Centre in Milton Keynes. This is a central NIHR funded facility, which holds an HTA license (License number: 12624).

Staff at the storage centres will ensure that genetic samples are processed in accordance with strict health and safety guidelines and under the requirements of the Human Tissue Act (HTA) 2004. The link between the participant ID and de-identified data will be kept in a secure database accessible only to the lead investigators, the NIHR BioResource team members and senior researchers.

Bulk genetic data will be stored at the High Performance Computing facility at the University of Cambridge or on the Clinical School network both behind appropriate firewalls.

Useful links for more information about use of personal and biological data

The EU General Data Protection Regulation (GDPR)

The General Data Protection Regulation is an EU Regulation which was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the rights to access any information held about them.

Human Tissue Act 2004

If you provide the EDGI team with a saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.