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.

Outrage and disgrace in the UK: NHS genetics database laws allow selling people's health data against their will to private companies

Yes, apparently, the safeguards put into place in the UK laws and rules around a planned national genomic database – created out of the biological samples collected from people in the regular process of sample taking and diagnostics for regular NHS health care purposes – to protect individuals from undue harm and integrity breaches are far less than satisfactory. They provide ample room for commercial companies to purchase individual and identifiable genetic information without any consent of the people concerned. At least, this is what an analysis performed by the independent investigative platform Ethics and Genetics suggests, and the claim is solid and credible enough to be outed today in a lengthy article in The Guardian.

To my eyes, from what is brought to the fore by these two documentations of the matter, this is a major scandal, outrage and a disgraceful – yet predictable – consequence of the completely irresponsible hurry with which the government of David Cameron has tried to tear down the barriers between, on the one hand, genuinely societal public interests and common goods and, on the other, the the petty interests of private entrepreneurs and business operations to make another little bit of money with regard to the health and health care related needs of ordinary people. It is, to my eyes, particularly mind-boggling that a representative of what is supposed to be a conservative political party is unable to see and uphold this elementary distinction.

The easily identifiable root of the problem is, of course, the completely mindless notion of there ever being any such thing as a viable interest of a commercial party to access any of these data without consent. There are indeed cases where access to an identified individual's genetic or other health data without consent may be warranted for truly public and overwhelmingly important interests, and one may even imagine that such interests would include pure research and not only security related actions, such as in the case of communicable disease emergencies, or compassionate ones as in the very rare case of individual needs of quick diagnosis that may require access to data about relatives. However, this access would then be granted (after due scrutiny to grant permission) to institutions appointed or accredited to serve the same public interest, such as public health authorities, public hospitals, licensed doctors in care of the patient in question or, in the case of research, universities.

However, if commercial companies want to access people's genetic data for whatever purpose (several of which can easily be imagined not to be in the interest of the same people), it is their business to persuade people to provide such data to them after due information about the pros and cons, risks and befits – including the recent findings that anonymising of such data is much more difficult than previously believed. For a government to allow such access without consent would clearly violate central human rights in their UN as well as their EU variants, and in addition the Helsinki Declaration. Aside from being completely immoral in its own right regardless of what minimally decent ethical system you apply, of course.

So the solution is very simple. Amend the law with a strict and overriding ban for any commercial party to access the information stored in the planned national genomic database, and a similar ban for any party with legitimate access to give commercial parties secondhand access. This allows for all of the things in the public interest and to the benefit of the common good, such as research to develop new treatments and drugs that one may wish for. It's just that commercial companies will have to outsource some of this work to, e.g. public hospitals and universities, without gaining access to the data that they work with, while of course reaping the harvest in the form of developed products to sell.