If you have provided a saliva sample for yourself and / or your child, the saliva samples will be sent to the University of Bristol research laboratory which is licensed by the Human Tissue Authority. Your family’s name and address will not be attached to the saliva samples. A sample of DNA will be extracted and stored securely and anonymously for research about genes in the future. The saliva samples will be destroyed once the DNA sample has been extracted.
The DNA samples will be used for research purposes only. Researchers using the DNA samples will not have access to your family’s name, address or any other personal details that could directly identify individuals in the study.
The DNA samples will never be used for paternity testing or human cloning. Your DNA will never be given to lawyers or insurance companies. We will not sell or make any profit from the samples you give.
If you took part in phase 1 and provided a saliva sample, the information from this sample and related analyses will continue to be used for research purposes unless you tell us not to. Genetic information from these samples has not yet been added to the study for research, though we may do this in the future. This hasn’t been decided yet and is subject to funding, which means that any data may not be available for some time. We will update these website pages with more information about this in the future. If you prefer that we don’t do this, please let us know.