The All Wales Genomic Databank (AWGDB) is a research initiative designed to improve knowledge and understanding of genetic conditions. By collecting and managing data from individuals undergoing testing within the NHS All Wales Medical Genomics Service (AWMGS), the databank aims to support research that helps patients. Participation in the AWGDB is entirely voluntary. The collection of genomic data and access to medical records happen after the individual has provided informed consent and signed the necessary documents.
Participants are free to withdraw their consent at any time without needing to provide a reason. A decision to withdraw, or a decision not to take part initially, does not affect the medical treatment or care an individual receives either now or in the future.
What is the Databank?
The AWGDB facilitates access to health and genetic data generated by AWMGS for approved researchers. It is managed by Wales Gene Park, an organisation within Cardiff University, and is funded by the Welsh Government. Cardiff University acts as the sponsor for the databank, ensuring it is responsible for looking after the information and using it properly.
The primary goal of the databank is to increase research capabilities. While the data is collected as part of routine clinical care, it is valuable to researchers trying to understand why diseases occur and how to treat them.
How Data is Used and Protected
The AWGDB collects two main types of information from participants:
- Genomic Data: The sequence data derived from DNA tests.
- Health Data: Relevant information from medical records, such as clinical history and test results.
Security is a priority for the AWGDB. Data is stored on secure servers using industry-standard measures. To protect privacy, identifiable information (such as names) is replaced with a unique code before being shared with researchers.
Global Research Collaboration
The data held by the AWGDB is accessible to approved researchers worldwide, including those in hospitals, universities, and commercial companies. This broad access is intended to foster the development of software, tests, drugs, or other advancements that may benefit future healthcare.
Access to the data is strictly regulated. Applications for data access are reviewed by a panel of experts and patient representatives, and researchers must sign agreements to keep the information safe.
Contact Information
If you, or your child, are a patient who has had, or is having, genetic testing through AWMGS, and would like to talk to us about participation, or if you are a researcher who would like to talk to us about the data we hold, please get in touch on the contact details below:
By Phone
029 218 34013
Ask to speak with Rhys Vaughan, Genomic Consent Manager