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Who will save us from the privacy invaders?

Soon our most intimate details - our genomes - will be on open display, as liberalisation turns our private information into a global peep show for everyone from fraudsters to pharmaceuticals warns Nick Booth

How many of us knew from the outset what social media companies were doing with our private information? It took a long time for the penny to drop. There are still people who think all those data warehouses are run by philanthropists. It’s no coincidence that data centres are so ugly - after a while you get the face you deserve. Those grey concrete gulags - surrounded by barbed wire fences - are the true embodiment of the spirit of social media.

There are still gullibles out there who believe that ‘corporate social responsibility’ is more than just a marketing schtick. There are still people who think there is ‘empathy’ to be found behind the dead eyes of the people who spout social media marketing slogans.

But it gets worse. The wearable gadget craze and the rise of vanity medicine take personal intrusion to new depths. Be honest, did you have any idea that the firm behind the band on your wrist sells all that data - which you were gullible enough to upload to its data warehouses - to all comers? There are tons of research companies that will pay good money for our ECGs.

Then there are the companies that persuaded us to lets them get their digits into our DNA.

Companies that offer testing to consumers have even more detailed information about our DNA. Why? Because we’re mug enough to send them our blood samples, in the vain hope that they’ll tell us something about our genetic make up.

Other genome shopping companies offer health information. Give them a sample of your blood and they look for genetic variants and warn you of your risk of disease. York Testing promise to report on food intolerances. The report said I’m intolerant to beer, breed and gin, which was pretty useless, because I’m not going to act on that information. What action does it take with my information though?

This is all dreadfully ominous because in about 18 months to two years, the differences between all the world’s silos of medical data will melt away. So there will be a global ocean of medical information, gleaned from every personal intrusion, medical record, clinical study and pharmaceutical research exercise, ever.

Which could be ideal, if the information was used responsibly. All those medical researchers could dovetail their efforts and make huge advances that would benefit everyone. On the other hand, it could be a dystopian nightmare, with our genetic information being exploited by crooks and corporations the world over. Insurance companies would pre-emptively black list us, based on their predictions of our type. Countries might ban us from entering. Human Resources officers could use it to automatically discriminate.

It would get so horrific we would look back on today’s cyber bank robbers with affection.

Only Blockchain can save us from this. A few ethical companies have emerged so that we can control the release of our private information. If pharmaceuticals want to look at our genomes, they’d better bring a bucket of money to the peep show. And we should get to select who sees it.

Precision medicine company Shivom uses blockchain to allow each person to restrict access to those it gives consent to. So you can choose to make money by releasing personal information for medical research.

In the same spirit, EncrypGen launched a similar product this week - an online database to which subscribers can upload their digitised genome.

It’s about giving patients back control of their private lives, says Shivom CEO and founder, Dr Axel Schumacher. Once control is established, and privacy protected, we might even be persuaded to trust wearable gadgets once again.

The beauty of this would be that our bodies could be constantly monitored by Artificially Intelligent agents. These DocBots could tell us when our blood pressure is too high or our haemoglobin is too low and urge us to take affirmative action. This sort of preventative medicine, in tandem with companies that can help us to keep perfect medical records, will be invaluable.

So there’s a massive threat to us, and a massive opportunity for service providers to protect us. As a Shivom-enabled DocBot might say: you’re looking vulnerable. You should get some more Blockchain.

This was last published in March 2018

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