![[Opinion] EU plans allow Big Tech to exploit your medical records, without permission](https://media.euobserver.com/0c45b95e0e19efa1d73140b942389153-800x.jpg)
In May 2022, the European Commission proposed the European Health Data Space (EHDS) in an try to enhance the methods by which individuals’s delicate medical information is made accessible for numerous sorts of makes use of.
That contains the power for hospitals and physicians to share details about present sufferers with professional colleagues overseas. For instance, it is supposed to make it simpler for a GP in Sweden to obtain a digital copy of their Romanian affected person’s CT scan outcomes from the radiologist in Romania so as to proceed remedy.
The EHDS additionally proposes to legally compel hospitals or physicians to hand out your medical data to a newly created authorities company, which in flip, can allow entry to anybody who claims a analysis curiosity. That contains not solely lecturers but in addition pharmaceutical corporations, wellness app startups and even information harvesting Big Tech companies like Google and Facebook.
Your medical data embrace particulars of bodily, psychological and sexual well being, drug and alcohol historical past, and any household and work-related issues that you just thought you’d disclosed in confidence to your doctor solely. What’s worse is that the data in medical data is sort of not possible to successfully anonymise, which means it is comparatively simply identifiable as yours.
That is why 75 p.c of Europeans mentioned in a recent Ipsos poll that they’re solely prepared to grant researchers entry to their medical data if they’ve been requested for his or her express consent, and that is what the EHDS ought to require.
Big Tech is on the transfer
Without such a consent requirement, Google, as an example, may receive entry to the small print of your most cancers remedy or the outcomes of your final psychotherapy session to prepare its new AI for some well-being app. And the result of which may feed into the corporate’s promoting enterprise.
If you do not like that, you might be in unhealthy luck: the EHDS doesn’t foresee sufferers being requested for his or her permission; it doesn’t even embrace a proper to object to this type of extreme information sharing.
Your medical data include details about all elements of your life. From the second you had been born, by means of childhood, puberty, and each sick go away, psychological problem, and different well being points you ever had. You ought to be the one in charge of it.
More than a dozen organisations representing sufferers, medical professionals, individuals with disabilities, shopper and digital rights organisations, in addition to employees and commerce unions have written to members of the EU Parliament, urging them to introduce the consent requirement within the well being information proposal. This is essential for shielding sufferers’ rights and making certain that they’ve management over the usage of their personal medical data.
Bye bye Hippocratic oath
The EHDS would make physicians and different medical professionals complicit within the compelled commercialisation and monetisation of each side of your well being without ever asking for your consent. It would destroy the Hippocratic oath of confidentiality by which each and every medical skilled is meant to be sure.
The international tech trade is simply ready for the chance to get their palms on Europeans’ medical information. Apple already has an intensive “digital well being” supply and, in 2020, Google paid over $2bn [€1.82bn] to purchase well being system maker Fitbit in an try to enter the well being information market.
Google’s acquisition of Fitbit demonstrates the large financial worth well being information has, even to corporations who don’t contribute to public curiosity medical analysis, and why it ought to by no means be shared with third events without your consent.
Not forgetting governments and cyber-criminals
Your medical data should not solely of curiosity to companies. Once saved in central, state-run information centres because the EHDS proposes, they might simply as properly be misused by your personal authorities.
In January 2023, Polish police raided a private gynaecologist office within the metropolis of Szczecin. The prosecutor claimed that “prison acts” had been carried out within the type of medical abortions requested by sufferers. Poland has a de facto ban on abortion. During the raid, medical data relationship again so far as 1996 had been confiscated.
Just think about how simple it could be for the Polish authorities to persecute any lady whose medical data include the slightest indication that she may think about in search of an abortion, if all people’s medical information was held in a central database run by that very same authorities.
And there’s extra: forcing the medical data of thousands and thousands of individuals right into a centralised database creates an extremely engaging goal for malicious hackers all over the world.
With this type of intimate info, frequent criminals can extort ransom from you by threatening to expose your medical particulars. Just final yr, a prison ransomware gang broke into the medical database of a healthcare methods supplier within the US and began publishing nude footage of feminine breast most cancers sufferers on the web after the supplier refused to pay the ransom.
Medical analysis is extremely necessary and sometimes depends on entry to such information to develop new remedy and advance our understanding of the human physique. But whoever desires to do this analysis should at all times ask for your permission to use your information first. Ideally, they need to be obliged to launch their analysis outcomes again to the general public, in order that it may be of most frequent worth to us all.
EU lawmakers due to this fact should amend the EHDS in that sense, in order that we are able to proceed to entrust our physicians with essentially the most intimate particulars of our bodily, psychological and sexual well being.
