u/HaemophiliaRights

My recent post about the National Haemophilia Database in the UK on Instagram explains how in the UK being born with Haemophilia means you automatically surrender your most confidential health data to a private company for your whole life and afterwards.

You must actively log all of your information or risk losing your life saving medications.

I've personally removed my data for research purposes but for non-research purposes it's impossible to opt-out.

I thought it was important to share here, the final slide is a guide to remove your data (for research purposes)

Did you know about this? And if you aren't from the UK is this standard practice in your country?