1/3 🚨 The final negotiations on the European Health Data Space #EHDS law are happening later this week.
✊🏾 We are calling on MEPs to stand firm and insist as a bare minimum on the right to opt-out for everyone in the EU when sharing their personal medical records with third parties.
Here's why...🧵
2/3 #EHDS claims to give people more control over their private medical information.
❌ Without an opt-out right in ALL member states, it will do the opposite: deprive people of that control.
People's trust in EHDS and Europe’s new digital health infrastructure has to be earned.
3/3 🇪🇺 EU member states want to decide individually about whether their citizens deserve a right to opt out.
If lawmakers allow this, it will create a hodgepodge of conflicting national rules in an already complex regulatory environment 🙅♀️
LSimova@eupolicy.social
@echo_pbreyer
**EDIT** because valid points made by @Huubje, @max & @petrosyan:
Yes, an opt-in for #health data use is absolutely preferable. We and many other civil society orgs have advocated heavily for an opt-in requirement in the #EHDS, e.g. here: https://edri.org/wp-content/uploads/2023/04/Joint-public-letter-on-consent-in-EHDS-1.pdf
Unfortunately, however, the only thing left on the EU's negotiating table (called the "trilogue") now is a right to opt-out. Opt-in has been discarded by lawmakers and it would be futile for us to demand it from them at this stage. 😔
@edri @Huubje @max @petrosyan Better no regulation than a bad regulation.
