Medical Snapshot System
The Medical Snapshot System is a way to improve medical systems using IT systems to isolate patients and staff from information that would trigger an ethical review. In 2007 when I first developed this and explored how it might work in clinical contexts a lot of the concepts were new and the technologies were still experimental. Now in 2023 we can safely and cheaply obtain patient data that should not be disclosed to either the patient or the patient's doctor, for ethical reasons - and yet it may be vital to diagnosis or survival at some later date. Law and ethics are a big part of this, and the emerging concept of Personal Data Donation allows for the fact that someone cannot waive their GDPR rights.
The concept is about the timing and direction of information flows. An everyday use of this is when sequestering a jury in a court case. It is unethical for the jury to use information known today, they can only decide on the facts as known at a certain point in the past. Similar notions of timeshifting are how my favourite Reversible Computers work.
See the Full proposal version 4.1 here.
I have qualitatively validated this in discussion with patients, medical systems researchers, doctors and nurses. More formally, risk modelling should be used, which is what I am developing in my work at the University of Southampton.
The next step would be to design a trial in a real-life medical system. There are plenty of organisations with incentive to participate, starting with the patients and including manufacturers of medical monitoring devices. From initial enquiries it seems there would be a lot more willingness to try this technically (particularly on cohorts outside Europe) than fully engage with the ethical aspects.
Specifically, since 2007 a lot of progress has been made towards tricorder-like technology first imagined in 1966. Today insulin levels can be measured from body sweat, LED laser photonics can detect many viral and bacterial infections, and there are handheld devices on the market offering reasonably accurate genomic results. All of this supports the basic premise of the Medical Snapshot System.
The Not Before Time service is highly relevant as a potential secure information delivery mechanism with dates defined by the results of ethical analysis.