If there is a buck to be made by large corporations (or even small ones) then this will happen. period.
Private sector businesses could obtain "identifiable" information about patients without their consent under a new scheme that will see medical data made commercially accessible, according to information disclosed by the government. Under plans previously unveiled by the government, a new research body, the Clinical Practice …
If it means they find a cure for all diseases then who cares?
Its not about cures, its about profits.
If it means they find a cure for all diseases then who cares?
Get a grip on reality AC, ALWAYS follow the money trail, who would benefit from access to such information? How about Insurance companies??
"Ohhhhhh Mr AC, I see your blood pressure is raised from your last health check , and your farther had a heart attack, sorry we'll have to double your insurance premium and your permanent disability insurance is cancelled as well".
"buck to be made". "period." Ya'all are not from around these parts, are ya' boy.
Re: Buck? Period.
Indeed, these parts being the land where corporations rule. Too bad we couldn't have people being at least equally as important. In fact, that's what's wrong here. This is all about the health of corporations.
You aren't seeing the whole picture..
You appear a little naive. You also appear to be assuming that the corporations willing to pay big bucks for the medical histories of entire sections of the population have those people's best interests at heart.
Now, while I do genuinely believe corporations actually do a lot of good, I don't believe for one second that all of them exist only to do good.
A couple of reasons spring to mind why this is a terrifying idea.
1) Insurance. I don't know how much time you have spent dealing with them, but Insurance companies will use any excuse not to pay, or not to insure you. How easy do you think it be for you to get any kind of insurance if the insurance companies knew your family had (say) a history of heart attacks, cancer or strokes that were somehow genetically caused? What about if the genetic records they obtained about you showed some sort of genetic disposition to suffering those conditions that you were not aware of?
2) Employment. Employers seem to be asking for increasing amount of data about potential employees. For instance, several employers are now insisting on access to employees' social media accounts and in some cases credit checks. How would you feel if you found a well paid job that you were perfect for and were not offered it purely because your parents had bad health?
3) Personalised advertising. While I find this offensive enough anyway, imagine the kind of explaining you'd have to do if you let a mate borrow your laptop for a few days and he (or she) saw a lot of adverts for remedies for sexual diseases just because you'd recently gone to the local GUM clinic with a dose of the clap.
Data protection. Not necessarily for governments
Once again treating your data as their data.
""Information may be made accessible where it has been effectively anonymised..."
I think they mean 'INeffectively anonymised'...
Actually, no, it's not a typo is it, they said it with a straight face....
And we all know how much practice private business has had in DE-anonymizing data. Once they figure out datum A is from the same person as datum B, they keep the relationship logged, keep doing so for other linked data until they find enough information through voluntary consent, legal mandata, or public information to identify any one of them. Then suddenly ALL of them are identified.
You just watch. All that "effectively anonymized" data will be effectively DE-anonymized inside of two years.
All your data monetised for us
It's not just the NHS. When my mother died, after winding up her affairs I had her mail redirected to my address for six months. Soon after, I got a letter addressed to her at my address, from SpecSavers (high street optician). Note: this was not redirected mail from the Post Office - SpecSavers had her name with my address.
I phoned SpecSavers and got put through to their IT deartment (eventually) and was told that the Post Office redirection database was available to 'selected companies'. The IT man told me he would remove her details from the SpecSavers database.
So, if you have an abusive spouse or a stalker and they work for SpecSavers (and other companies who've paid the Post Office I assume), there's no point in moving to try to get away from them - unless you're careful not to use the Post Office redirection service.
Re: All your data monetised for us
Ah! That explains how a shop that I last visited 15 years ago managed to address mail directly to me at my current address some three house moves later.
Post Office service described here http://postoffice.mobi/marketing-services-regular/choose-your-audience/data-management/ncoa-suppress
There are two boxes on the form to prevent sending your new details to relevant companies (like the optician) and also to prevent marketing mail being sent (home improvement vouchers).
Arguably should be opt-in but some might consider it a helpful service. At our office we always ask whether or not you want to allow any of this.
There are also options to redirect variations (sue and susan), and if all the smith family is moving house, If it's permanent or temporary, etc etc.
So, don't write off the system. Just tick the right boxes. They are relatively easy to see and easy to understand.
He who pays the politican calls the tune
Like most "citizen protection" in the UK, its only Lip Service, there is no real desire by Government - who are in effect a bunch of company owned puppets - to effectively prevent the exploitation of us to the fullest degree possible.
They need a sharp reminder of Whom the are SUPPOSED to work for - and it isn't those with those writing the donation cheques.
There is nothing more corrupt than politics and politicians - they make even bankers look like paragons of virtue
are behaving so much like "Big Corp" these days that one wonders if the two aren't just one of the same.
Re: The government
Adnim, governments love corporations and all other organizations that do some of the work of regimenting citizens for them. They collect PAYE, they make sure the masses are where they should be most of the time - enclosed in their little boxes doing whatever they have to do if they want a pay cheque at the end of the month.
Better still, corporations aren't limited by most of the petty rules and human rights that governments have to pay lip service to. Here or in the USA, you may live in what is laughingly called a democracy, but if you are an employee you work for a fully-functioning fascist dictatorship.
Bad karma: we can't find that page!
You asked for http://www.ethicsandgenetics.org/EthicsandGenetics-2013-Privacy-the-CRPD-and-the-Commercialisation-of-Personal-Medical-and-Genetic-Information.pdf/download/ 14-page /, but despite our computers looking very hard, we could not find it. What happened ?
the link you clicked to arrive here has a typo in it
or somehow we removed that page, or gave it another name
or, quite unlikely for sure, maybe you typed it yourself and there was a little mistake ?
My experience - if you have enough 'anonymised data' you can work out who the individual is.
We had 'anonymised' comment forms at a previous employer where one could put ones view on the new Vision and Mission Statement (and similar BS). However as departments were small and you were supposed to fill in the number of years you had been there it took no effort at all to see who had made the comments.
Anonymous - Obviously!
Difficult to Contact
Well, yes we did sell your medical information GenIn (where 'If the gene fits you must remit). We placed a public notice in Richards Daily Observations; a daily which meets the standards for attempts to contact you. It is not our fault if you didn't see the notice.
It says here that your blood pressure is rising rapidly. We'll need to report that.
"How can we be sure that this will not affect insurance claims or result in genetic discrimination?"
Oh that's easy. You simply make it illegal to set an insurance premium (or refuse insurance) on the basis of medical information about the applicant. Since we do not pick our genome, it is reasonable to legislate that no-one should be penalised for having a duff one. It's what they did for car insurance and sex, after all.
As a side effect, by reducing the financial value of traceable medical records, you then make it more likely that people will consent to sharing that information with researchers.
@Ken Hagan -- Re: insurance claims
You simply make it illegal to set an insurance premium (or refuse insurance) on the basis of medical information about the applicant.
Ken, you've seen how well that's working out on the West side of the pond, haven't you? How is it you can assume that it will work out any better on the other side?
Re: insurance claims
Don't bother Ken. The government agent provocateurs who keep most EU sheep in the boxes where the government thinks they belong are currently engaged in reinforcing those constraints via the proven method of a good one minute hate.
Re: @Ken Hagan -- insurance claims
I make no assumptions about the East Pondian experience. I already live in a country where medical insurance has been provided out of general taxation (and so independently of medical condition) since 1946. It ain't perfect, but it's pretty good evidence that you don't *need* to fine tune prices on a per-customer basis if you can spread the risk over enough customers.
I think the real question (given the abundance of different systems that have been tried on the East Side) is why would anyone on the West side of the pond reckon their healthcare system was representative of anything much.
"When you sign up for your account, we'll need to ask you to provide your genetic information for record in order to ensure that we are not unfairly discriminating against people based on their genetic information. We'll also need to know about any private medical conditions. To ensure we don't discriminate against people based on any private medical conditions. And your social security number. In case we're discriminating against certain social security numbers.
"What's that, sir? You don't want an account now? I'm afraid it's a bit late for that, I've already asked Google for all this information sir. I just need to cross reference it to ensure that the data is accurate for our data protection needs. If you don't give me the data then our records won't be accurate and then you'll have caused a data breach.
"Thank you sir. Your data is now stored securely on the central database under my desk."
I have complete confidence in the public sector's ability to misplace sensitive and confidential data when there's a profit to be made by the private sector.
"legal authority to access identifiable information may be provided through the consent of the citizens concerned"
--Which you will have to grant in the EULA you must sign in order to receive treatment. Simple as that.