Data Sharing and the Idea of Ownership.
Do I ‘own’ my genetic information? Insofar as it is an offence in the UK for anyone to seek and discover my genetic code without my consent, I have good reason to believe that I do. In an intriguing paper (1) Prof Montgomery gives several every-day examples of our need to agree what can be owned in order to set the scene for consideration of who ought to own genetic information. I was a little surprised to see a case emerging for the National Health Service to be the true owner of data revealed about me (I can hardly call it “my” data if the NHS owns it!) To avoid Spoilers I’ll not say more about his Conclusions, but will add a couple of thoughts that occurred to me as I listened and read.
The first and unavoidable was my twin granddaughters interrupting my thoughts to ask for a chocolate treat from Grandad’s Tardis. We (their family) have used genetic analysis to prove their identicalness without their consent, and now neither may claim exclusive ownership of that information.
The second was that the developed law surrounding the use of images might be a useful parallel. While I might reasonably object to the publication of a portrait of myself for the personal gain of someone else, I should not be permitted to prevent the publication and viewing of a picture just because it happens to include an image of me or any part of my body.
I recommend listening to the lecture video that goes with this short piece to put you in a frame of mind to consider this remarkable question;