Chief Operations Officer, Generation Scotland, talks to us about biobanks
How do biobanks help you?
I have worked for almost 10 years for biobanks. Working for them has been a hugely rewarding experience. I have done a variety of roles within them and really come to admire the volunteers’ willingness to participate in these studies for the public good.
What is the most interesting or most useful thing you know which a biobank has been used for?
One of the more interesting results of research on a biobank that I know about is research around type 1 Diabetes. Traditionally it has been thought that Type 1 is diagnosed prior to the age of 30. However, research done on UK Biobank genetic data at the University of Exeter shows that up to the age of 60 people can develop Type 1 Diabetes and it is important to diagnose it correctly or people can develop insulin dependency. This research upended people’s understanding of diabetes diagnosis.
Have you had to grapple with any ethical or social issues around biobanks and if so how did you deal with these?
One of the things that volunteers in the biobanks I’ve worked for consented to was that the biobank can link to data from their General Practice record. GPs are very careful with allowing any data released and in order to get a copy of this data each GP Practice has to agree to release the data. Many practices wrote to the biobank volunteers in their practice to make sure they agree with this. I was the primary contact for all queries about the project and spoke to many participants who were very surprised that GP’s were holding things up. They had given a lot of time to participate in the biobank project and they felt their GP didn’t appreciate that. At the same time I spoke to many GP practices who were very worried about agreeing to providing data. There were ethical issues from both sides.