The new chair of the NHS's data watchdog
says that giving researchers access to health records without patient
consent is 'ethically unacceptable'
The prime minister and Department of Health
want to give Britain's research institutes an advantage against
overseas competitors by opening up more than 50m records, to identify
patients who might be willing to take part in trials of new drugs and
treatments, reports The Guardian.
Without you knowing, without your permission.
They are consulting on a proposal, part of
the NHS's draft constitution, that would permit researchers for the
first time to write to patients who share a particular set of medical
conditions to seek their participation in trials.
Got a clinical trial, then why cant they write to doctors asking for donors, so doctors can ask their patients, as they have to do today.
It would result in patients receiving a
letter from a stranger who knew their most intimate medical secrets,
which would be regarded by many as a breach of trust by doctors who are
supposed to keep information confidential. It raises the prospect of a
letter being opened by a relative, which could cause embarrassment.
Data for sale! Data for sale! Any bids on 50m health records. Have this government expunged the word 'confidential' from the dictionaries yet?
Harry Cayton, who is about to take over as
chairman of the National Information Governance Board for Health and
Social Care, the new watchdog on use of NHS data, said the proposal is
“ethically unacceptable”.
Not just ethically unacceptable, but also morally wrong and yes, its illegal.
He said: “There is pressure from
researchers and from the prime minister to beef up UK research. They
think of it as boosting UK Research plc. They want a mechanism by which
people's clinical records could be accessed for the purposes of
inviting them to take part in research, which at the moment is not
allowed. I think that would be a backward step.
Beef it up then, by asking patients via their doctor.
“It would be saying there is a public
interest in research that is so great that it overrides consent and
confidentiality. That is not a proposition that holds up.”
NOTHING overrides consent and confidentiality. Government don't own me or my medical conditions.
Cayton said the government issued a
handbook alongside the draft NHS constitution saying that researchers
should be allowed to use care records, without the informed consent of
the patient, to identify people suitable to participate in approved
clinical trials.
No, No, and thrice NO.
He said: “We believe this is a breach of
good practice in confidentiality and consent, and have questioned if
there is a sound legal basis for it.” His board has written to Alan
Johnson, the health secretary, asking for the proposal to be quashed.
Listen to the expert Alan, your government likes experts. What's that, oh yes, of course, only when it suits.
A health department spokeswoman said: “We
are consulting on the NHS constitution to ensure that the final version
is fit for purpose. We welcome the board's valuable comments and will
consider them alongside other responses. We expect to publish our
response shortly.”
Which means that the Eugenics team have already decided. Want to try delivering health care dearie, that would be a good start, stick to what the NHS is for.
Medical researchers currently have to ask
GPs to identify patients who might be suitable for a research trial. It
relies on the GP sending letters to patients suggesting that
participation might bring medical benefit.
And that is the way it should stay.
Cayton admitted that the current system is
laborious for researchers. He said an alternative solutions would be to
allow researchers to trawl electronic files without gaining access to
individuals' names and addresses. The system might be able to generate
letters to a target group, informing people about a range of trials
going on in their area.
Can you spot the deliberative lie in that statement. Trawl files, no access names/addresses, but would send letters to targets. Does not compute.
Laborious. Tough shite. Under no circumstances should big pharma be given Legislative protection because something is laborious.
Legislative protection to allow big business to make more money, and screw your privacy, your rights and your data. This is how modern government protects its citizens.
There was a regime 70 years ago who did this, and we all know the result of those trials.
The government proposal in the article above has been rated FFF using the Libertarian Party policy test rating as follows:
Libertarian Test – Failed
Stalin Test – Failed
Rule of law – Failed
This
indicates that it is detrimental to the citizens of the UK and would be
considered bad law. This law would therefore be repealed by a
Libertarian Government.
But, There IS another way!
The
Libertarian
Party
is the only party that has promised to put an end to these databases, NPfIT in particular, and ending the Politics of
Fear by repealing many of the draconian laws enacted over the past
10
years.
The Only home of Libertarian policy in the UK
Your Life, Your Country, Your Choice.