Selling Gene Data

Here’s a piece from the Guardian on how the NHS is setting up a database for genes and going to be selling the data they collect:

Sale of personal gene data condemned as ‘unethical and dangerous’

[reading time: 3 minutes]

It’s summed up in the first paragraph:

Private firms will soon be able to buy people’s medical and genetic data without their consent and, in certain cases, acquire personal information that might enable them to identify individuals.

This scares me. You expect this stuff from DNA testing companies like 23andMe, but not from the NHS, a publicly funded health service. Yes, this information is important. I’m sure all the great medical breakthroughs of the next century are likely to come from studying genetics. So thus all the money from the problems they solve and the information they discover will too. And that gets Big Pharma excited. Which is why they’re willing to pay a decent amount of money to the NHS for this data. Which means basically the NHS is just going to be a middle man, and the middle man never gets rich. The NHS will do okay from these deals, sure, but not enough to justify selling the most personal of all data about the people who pay for the NHS with their taxes. It’s not worth it.
Instead of just keeping this data saved somewhere and maybe fiddling around with it to see how obese the nation is and how many people have descended from a Bavarian sheep farmer, they should go on the offensive, despite their limited money now-a-days, and try to do some real good. I’d much rather read the headline “NHS cures Alzheimer’s”, than “GlaxoSmithKline cures Alzheimer’s.”

And of course selling the data is a side issue to the main issue that they’re collecting it at all. But I’m not going to get involved in that whole affair, especially as I don’t even know how I feel about it.

I’ll just say this: I don’t trust the NHS with my postcode, let alone the gene data that makes me, me. (And how could you blame me when the section of the NHS in control of all this data has a website that looks like this.)

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