I'm following @beuc's #EHDS #ConsumerDebates online and I still fail to understand this:

Their representative polls found that "the further away from the GP, the less people are willing to share their #HealthData" and yet BEUC concludes that while data use by medical profl's should require #OptIn consent, for secondary use by #BigPharma and #BigTech an #OptOut option is enough. ❓❓❓

The Commission official continues to peddle the "the #EHDS gives patients more control over their data" nonsense. It doesn't.

#ConsumerDebates

So good to see MEP #PetarVitanov pushing back and emphasising the risks of #discrimination and abuse in particular for #marginalised people when medical records are shared without consent as foreseen by the #EHDS.

#ConsumerDebates

The #EHDS's entire secondary use regime for #medical records is so shaky that the European doctors' association #CPME calls to completely exempt doctors from it. 🤐

#ConsumerDebates #privacy #dataprotection #healthdata

Lobby group #InsuranceEurope wants our medical records so they can be "competitive in the market", otherwise "higher prices", sorry folks.

Some people really have no shame.

#ConsumerDebates #EHDS #privacy #dataprotection

MEP #PetarVitanov points again at vulnerable folks 💪 Women in #Poland seeking abortion (abroad) need the protection provided by a #consent regime.

Abuse risks are all over the Commission's #EHDS proposal.

#ConsumerDebates

Great push-back from @beuc's #MoniqueGoyens against the insurance lobby: the whole idea of #insurance is the #mutualisation of #risk, so abusing medical records for individual premiums and prices breaks the entire system.

#ConsumerDebates

Oh my, #InsuranceEurope lobbyist pulls out the "data will cure #HIV" argument. And because data collection allegedly leads to lower insurance prices, it's really about #inclusion not #discrimination. 🤦

Sure.

#ConsumerDebates #EHDS

It's mind-boggling how the @EU_Commission rep just says "don't worry, anonymised #medical records are not personal data" while ignoring a decade of #computer #science and re-identification #research.

Example: https://vimeo.com/91204492

#anonymisation #privacy #EHDS #ConsumerDebates

ODI Friday Lunchtime Lecture: Why anonymity fails - Professor Ross Anderson

Vimeo
Of course the #insurance lobbyist gratefully jumps on that falsehood, throwing all the #innovation and medical advancement journey BS that the insurance industry allegedly provides at us. #EHDS #ConsumerDebates

OK @beuc's #ConsumerDebates event on #EHDS is over.

tl;dr:

🤩 @TheProgressives MEP #PetarVitanov seems to have patients' right to #privacy front and centre. Kudos!

😖 The @EU_Commission seems to neither understand #bigdata nor their own #dataprotection law #GDPR. Sad!

💸 The #insurance #industry wants to milk us for more profits. Surprise!

🤔 And #BEUC defends #patients' rights but for some reason less so when it comes to the secondary use of #medical records by 3rd parties.

*** END ***

@ilumium @beuc @TheProgressives @EU_Commission
The biggest failure is not the intent to create a medical data space. The biggest failure is to believe they can wriggle out of anything with magic wand anonymization. Next in line: Homomorphic encryption :)

@ilumium @EU_Commission

#FutureSucks
Endlich eine Zukunft der totalen Überwachung, in der die Menschen zu funktionierenden Robotern per Socialcreditdystem oder Genmodifikation, in effizientes Humankapital umgepolt wird.
Überwachungskapitalistische Biopolitik: Big Tech und die Regierung der Körper
https://link.springer.com/article/10.1007/s41358-021-00309-9
I am not ready for Braintransparency!
https://youtube.com/watch?v=hfqD5aW0X5U&feature=Shared

Überwachungskapitalistische Biopolitik: Big Tech und die Regierung der Körper - Zeitschrift für Politikwissenschaft

The article introduces the concept of “surveillance-capitalist biopolitics” to problematize the recent expansion of “data extractivism” in health care and health research. As we show, this trend has accelerated during the ongoing Covid pandemic and points to a normalization and institutionalization of self-tracking practices, which, drawing on the “quantified self”, points to the emergence of a “quantified collective”. Referring to Foucault and Zuboff, and by analyzing key examples of the leading “Big Tech” companies (e.g., Alphabet and Apple), we argue that contemporary forms of digital biopolitics are privatized, opaque, flexible, and not limited to the state. Instead, especially through the integration of wearable technologies, the biopolitical regulation of bodies is increasingly mediated by private tech companies. These companies rely on a questionable narrative of participation, responsibility, and care despite owning, and ultimately controlling, access to intimate health data and the proprietary algorithms mediating this data. The article shows that the proliferation of “surveillance-capitalist biopolitics” ultimately strengthens not only market power but also the epistemic and infrastructural power of the data-owning and gadget-producing firms. Finally, against an exclusively repressive and negative reading of biopolitics, and to effectively counter the forms of power emerging from surveillance-capitalist biopolitics, we propose four dimensions that are central to its democratization—namely privacy/individual sovereignty, democratic deliberation, pluralism, and epistemic equality.

SpringerLink