Of Surveillance Debates and Open Clinical Data

Revelations about the staggering levels of online surveillance that are now routine in this country have been met with a stunning silence from the UK government. There's an important meeting tomorrow where three MPs from the main parties are...

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Revelations about the staggering levels of online surveillance that are now routine in this country have been met with a stunning silence from the UK government. There's an important meeting tomorrow where three MPs from the main parties are trying to get some kind of debate going on this crucial issue. It would be helpful if you could ask your MP to participate. Here's what I've written:

I would like to urge you to join the meeting this Thursday when your fellow MPs Tom Watson, Julian Huppert and Dominic Raab will introduce a debate in Westminster Hall on 'Oversight of intelligence and security services.'

As has become clear in recent months, this is an issue that touches not only everyone who uses the Internet in this country, but also goes to the roots of democracy itself. I believe it is vital that we have a deep and open debate about what is the appropriate balance between surveillance and privacy.

At the moment, we have arrived at a situation where GCHQ is essentially monitoring the entire Internet as it enters and leaves the UK, simply because it now can, thanks to advances in technology. The legal basis for this seems to be a poorly-worded section of RIPA 2000, that was never meant to apply to surveillance on this scale. I therefore believe that it is important to begin to discuss what an updated version of RIPA should look like – one that takes into account the hugely different technological capabilities now available to GCHQ and others.

We must also build in safeguards for the future, otherwise this total surveillance could be easily subverted by a future government that wishes to uses this unparalleled knowledge of all of us to stay in power by any means.

And while you are in letter-writing mode, perhaps you could also drop a note to the Secretary of State for Health asking him to support moves to open up clinical trials data in, as I mentioned on monday. Again, here's what I've sent:

Without all the clinical trial data, suitably anonymised, we are forced to accept the word of the manufacturers that everything is fine. Since they have spent large sums of money on developing their drugs, and are naturally keen to sell large quantities of them (as they did to governments around the world at the time of the Swine 'Flu scare), it's just possible that they may not be totally objective on this matter.

That's why pharmaceutical companies must release all the results of their clinical trials as open data, so that independent researchers can check what has been found. There is simply no justification putting financial considerations above the health and lives of patients that trust their doctors to give them safe and effective medicine. Without open data, as the proposed European regulation would require, we can never be sure it is either.

There are some specific amendments that I hope the UK can support:

Amendment 191 which would ensure that clinical trials are registered before they commence.

Amendment 30 and amendment 250 which say that data in clinical trial reports should not be considered commercially confidential. These amendments would ensure that commercial considerations don't override the interest in public health research.

Amendment 193 and 253 which would ensure that if a detailed clinical study report is produced about a clinical trial, it should be made publicly available.

For me, one of the key things about these clinical trials is that they are experiments conducted on human beings, who have generously volunteered to put their health at risk by participating in the hope that society as a whole will benefit. Full reporting of their results (anonymised to prevent individuals being identified) should be a right, not a gift, and I urge the UK government to work with the European Union to affirm that in the new regulations.

Follow me @glynmoody on Twitter or identi.ca, and on Google+

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