England's medical data shenanigans
Some background here (there are more detailed articles but this one offers a good overview):
https://www.ft.com/content/9fee812f-...c-aeb25d3dd748
This data is quite literally a gold-mine, but it is also incredibly sensitive—and it is extremely disconcerting to see the govt. approach this initiative in such a cavalier manner, with such little regard for patients' integrity and autonomy (exemplified eg. by the onerous and poorly publicized opt-out procedure). People who might otherwise not have wished to have all their historical records scraped and shared with third parties—with commercial objectives—will fail to opt out in time, and, at present, there does not seem to be any way for them to have that data removed retroactively. In addition to the most obvious problems wrt consent, integrity, and autonomy, there's the additional problem of security; the data being scraped and shared will be barely pseudonymous, and it is safe to assume that almost any party that can obtain access to that data—whether by legal or illegal means—will have the ability to de-anonymize much of it. This is already relatively easy to do with much more limited datasets. There will undoubtedly be breaches, as the number of weak points vulnerable to attack increases with the number of actors granted access.
As a researcher, I would be extremely tempted by this material—because it has obvious and very direct relevance to my work—but deeply reluctant to work with it, knowing what ethical corners had been cut. I hope legal challenges are successful in halting the project, at least until people have been given more time and more support to opt out.
Phil Booth and others have been covering these shenanigans for a while, and he mentioned something quite alarming, in this thread:
Twitter Link
They must do better.
