UK Set to Sell Out it's Population's Medical Data and Records to Private Industry and Health Insurers

I posted almost a year back about a then apparently more restrictive, but to my eyes still outrageous, move of the UK government to frivolously open up a genomic database created out of the medical records and samples collected within the NHS in the course of normal health care (for diagnostics, safety and quality assurance purposes) for research not only by public research institutions, but also private companies in the pharmacological and medical technological area. Now, if this lengthy account is to be belived, it transpires that, apparently, the data base, which is due to be launched later this year, is not only genomic, but simply a general health research database created out of the entire medical history of the entire NHS "cohort", complete with rather specific personal information. It will not contain straightforward identification of individuals, but even government spokespeople admit that the "pseudo-anonymization" planned to be applied allows any research institution with access to a lot of informationto re-identify individual people, not even mentioning at all the recent discovery that just a little bit of genetic information together with publicly available online information can be used to trace people who have anonymously donated tissue to research.

But that's not the end of it: among the players which will be eligible to apply for access to this goldmine for – true – advanced medical knowledge and – equally true – the health business opportunity of the century are – hold your breath – health insurance companies. Yes indeed, the very same one's who are widely known to do their very best to exclude those people who are in most need of their product from buying it and to refuse paying out compensation if they are ever accidentally let in. These are the ones who the UK government and the NHS experts behind the new Health and Social Care Information Centre (which will be responsible for handling the database and provide the access) think are suitable parties to be helped to identify the heath frailties of individual persons, their children, family and so on. Mark Davies, who is something as peculiar as the "public assurance director" (let that one roll around your palate for a second, doesn't it taste a bit like "top blinker"?) of the HSCIC, pressed by reporters, admits a "theoretical risk" – apparently having never entertained the obvious thought that for an insurance company, identifying people's health risks as part of the general process mentioned above is a rational business procedure. If it's possible (and it is - even more easy than admitted by Mr. Davies), it will be standard procedure for a number possible purposes – everything from even more effectively than now screening people in need out from health insurance or compensation payment, to restructuring existing insurance schemes to more effectively weed out the potentially unprofitable customers by having no product that suits them. The "assurances" about transparency ring hollower than ever before as Julia Hippisley-Cox speaks of the right of people to be able to know who sits on their data and a "clear audit trail". Won't matter much when coverage of your recent surgery bill is being refused, will it?

Not very surprisingly, there's been criticism and debate, but the UK government seems to entertain no plan of setting a few sensible safeguards for those ordinary people who are supposed to profit from the scheme in place. Such as forcing private industry to commission any research using the database from public research institutions – thereby making redundant the reckless move of transferring data into the commercial secrecy protected hands of these far from public interest oriented parties, where as critics point put, no one will know where they will then go or how they will be used.

Read more here.

South Sweden Police's Registry of Roma is Illegal on Multiple Counts – and More Criticism May Well Be Coming!

So a while back I posted an admittedly rather annoyed and highly sarcastic piece regarding the revelations of a registry of more than 4 500 people, mostly of roma origin or related to roma people, some of them since long dead and over 1 000 of them small children, and the feeble and completely confused attempts of responsible police officials to deny any wrongdoing, responsibility or simply sweep the whole thing under the carpet. After that it has been revealed that the registry has contained a large number of people with no suspiscion of or  connection whatsoever to criminal activities and completely respectable lives, jobs social situation etc. – they just "happen" to be roma or having roma relations.

 As I reported about then, a criminal investigation of possible illegal actions in the setup, management and use of the registry was immediately opened by a criminal prosecuter and two police officers have since then been notified of suspiscions of crimes in this respect so far. Parallel investigations were opened by the the Commission on Security and Integrity Protection (SIN) and the Swedish Discrimination Ombudsman (DO). The former authority "supervises the use by crime-fighting agencies of secret surveillance and qualified assumed identities and associated activities" and today delivered its report on what has become known as the "roma registry". Reports in the press can be found (1st one in English) here, here, here, here, here, here, here.

The verdict is that the registry is severly misconceived from the outset, handled sloppily and with lack of discipline and illegal on multiple counts. This, it should be noted, is an administrative legal verdict and does not – however severe its administrative legal implications – by itself imply criminal wrongdoing of any person, but it's hardly good news for the already notified officers mentioned or others formally responsible or users of the registry in South or other parts of Sweden that may be under the criminal prosecuter's scrutiny. What the outcome of this criminal legal process will be remains to be seen.

Likewise, the SIN verdict does not settle the issue of whether or not the setup and running and use of the "roma registry" amounts to illegal discrimination (on ethnic grounds). This is the topic of the DO investigation, which is still ongoing. SIN does note in its report that, apparently, ethnicity has not been the only ground of inclusion of people into the registry – however, this does not settle the illegal discrimination issue, since it seems that people have been included (almost) only if they have either roma origins or relations to people of such origins. That is, while more or less well-founded suspiscion of crime or feared future criminal activity has indeed been a reason for inclusion, a great many people falling into that category have not been included and, seemingly, this is due primarily to their lack of roma origins or connections. It remains to be seen how the DO will assess this delicate situation.