Harvesting of medical data: how do people here feel about it?
by hazel from LinuxQuestions.org on (#5QAFA)
Increasingly "Big Pharma" wants to use patient data from the NHS as a research tool. Now I am a participant in one or two research programs to which I have contributed private medical and genetic data, but that was by my own choice. I volunteered for this because I wanted to make myself useful to society. I feel very different about allowing my NHS data to be harvested and used in this way.
I have written a letter to my GP making it clear that I do not consent to any uses of the data they hold on me except for the purposes of treating my illnesses. In particular I do not consent to them sharing it with anyone outside the health service. But I suspect that very few people have done the same.
It seems to me that we are sleepwalking into a world in which commercial AI can scan and sift huge medical datasets to discover just about anything or everything about us. Some of what is found will be medically useful but none of it will have been obtained by anything that I would regard as informed consent.
I have written a letter to my GP making it clear that I do not consent to any uses of the data they hold on me except for the purposes of treating my illnesses. In particular I do not consent to them sharing it with anyone outside the health service. But I suspect that very few people have done the same.
It seems to me that we are sleepwalking into a world in which commercial AI can scan and sift huge medical datasets to discover just about anything or everything about us. Some of what is found will be medically useful but none of it will have been obtained by anything that I would regard as informed consent.