What happens to your DNA?

Many parents and participants are understandably worried about what will happen to their DNA, or the DNA of their children, if they agree to take part in this study. We can assure you that we take the security of your family’s personal information very seriously.

Personal information on your family is stored on a high security computer system at the University of Oxford. Access to this information is only allowed to the research team and to a selected few people at the University whose job it is to check that the research is being undertaken correctly, including making sure your information is kept secure, as governed by law, and by guidelines on ethical conduct in research.

All the DNA samples you give us are stored at a separate site, at the Medical Research Council’s genetics unit in Harwell. Your family’s DNA will be stored securely and anonymously, and is not linked to any of your personal information. Even if people somehow got access to your family’s DNA samples at Harwell (which is extremely unlikely) they would have no way of knowing who they came from.

We know that sometimes when we test DNA, families are not what they seem. For example, the man who is the father of a child may not turn out to be the biological father. If we find this information we will not pass this on to anyone else, including yourself or your family. Nobody will know this information other than the researchers.

Your DNA will only ever be used for research into ear inflammation and never for anything else. We may allow your DNA to be used by other researchers who, for legitimate reasons, wish to look into the genetics of ear disease, but we will never pass your personal details on to anyone else. Researchers often share resources, such as DNA, because it is the best way of making use of what we have, and because it is the best way to do science. For example, there are thousands of people involved in the UK ALSPAC study who have agreed to allow their DNA to be used by other researchers.

If other researchers in the future do want to use your DNA, we would never tell them who that DNA came from. If anybody else wanted access to the DNA for reasons that were not related to research (including the police or lawyers) they would simply be denied access. In the extremely unlikely possibility they somehow got access to the DNA, it would be useless to them anyway because, as we said before, they would not know who it came from.

If you have any more questions about how we use your DNA or ensure its security, please contact Jane Lambie (research nurse) on 07590 355672.