Video Review: Data in the 100,000 Genomes Project

Genomics England has produced a short animated film to explain exactly what happens to the data it is collecting as part of the 100,000 Genomes Project. After watching it, I feel that I know exactly where my data would go if I was to take part in the project, and that they would be guarded like the crown jewels.

The whiteboard animation-style film (they're all the rage these days - the key is not getting so engrossed in the perfectly drawn animations or trying to anticipate where the pen will go next that you forget to watch and listen to the actual presentation) is very clear on the path that my DNA would take once it's made its way out of my body.

After being moved from the hospital where it was extracted, it would be taken to a sequencing centre, and then to Genomics England HQ where it would be met with lock and key, via a bit of mingling with medical data about my actual condition. Then they would remove all identifying information and threaten fines and sanctions for any scientist or researcher who dares to try and identify me from that vial of
matter.

Not only will Genomics England hold the blueprint to my genetic make-up, it will also be able to match that information with medical data and hospital records. This makes it clear that the research it'll be doing will concentrate on whatever condition I have that makes me a participant in this project. This kind of 'joining up the dots' of data about me sounds pretty impressive.

The animation does not mention any specific diseases, heritable conditions, or futuristic-sounding therapies that it hopes to target in its research, but talks in more general terms about researchers and scientists working together to find patterns and clues in people's DNA. The hope is that the findings will be able to 'give patients clearer clinical reports', and 'find treatments more quickly', not to mention help researchers 'develop new medicines and treatments' and help doctors 'understand medical conditions and treat them better'. Perhaps this lack of specificity is actually good thing as the potential discoveries the project may make are not overhyped and so it cannot be argued that patients are being induced to participate with the promise of a cure.

So perhaps the question 'what will my data be used for?' simply cannot be fully answered at the present time.

I think the point of this film is for Genomics England to reassure those 70,000 people they hope will take part in the project that their genomic data will be safe. And I believe it does this. Although, aside from the prying eyes of scientists and researchers, it's not clear exactly what
from. A bit of research on the accompanying website suggests to me that one of the biggest concerns people might have is the potential for rogue scientists and researchers to sell information about my genetic make-up for profit. So the animation is a useful little addition to an extensive FAQ section on data and ethics already on its website.

I really like the way Genomics England have used a very current and user-friendly approach to
explain the precautions it is taking to protect people's genomic data. Keeping an individual's personal information safe and protected is of paramount importance in this emerging and fast-moving area of scientific research, and so Genomics England is right to highlight its ample precautions.