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I haven't seen it mentioned yet on Hacker News, but Germany is about to pass the "Gesundheitsdatennutzungsgesetz". This bill allows anonymized access for resear
by V__ 3y ago
I haven't seen it mentioned yet on Hacker News, but Germany is about to pass the "Gesundheitsdatennutzungsgesetz". This bill allows anonymized access for researchers to all German health care data. Data from over 83 million people.
The example given by the health minister for how this might play out: Researchers find an interesting pattern in the data. They request the ministry to ask the matched people for permission to become participants in a study or direct access. If permission is given, the anonymization is lifted in part and a study could move forward. This alone would make Germany a pretty fascinating place for future AI research.
- zelphirkalt 3y agoSounds perhaps a bit naive, as one might expect from German government, when it comes to data. How much of such data does one need to de-anonymize someone? How easy will it be to accidentally slip identifying data in using whatever kind of system, that is supposed to be used? How easy will it be for any company like MS to correlate that data with all that other data they extracted without user consent?
- lb4r 3y ago>How easy will it be for any company like MS to correlate that data with all that other data they extracted without user consent? Doable to some extent, but would they really learn much that we haven't already told them, given our propensity to Google for symptoms and diseases? Personally, my worry here, if I had some embarrassing medical history that I wouldn't want people to know about, would be some malicious party gaining access to de-anonymized data and using it to blackmail, or just simply making it public. Edit: Come to think of it, insurance companies could probably have a field day with a data set like this.
- LadyCailin 3y agoThe civilized world has universal health coverage, so the insurance thing isn’t really a problem except in one particular country. But the malicious release is definitely a problem.
- fileeditview 3y agoIt never is a problem until it is. Insurance companies in Germany are also not benevolent. If there is a case where they do not have to pay they won't. If they can use data to save money they will do it, even if it worsens your conditions.
- snowpid 3y ago" Insurance companies in Germany are also not benevolent. " You know, that the leaders of public insuarances are voted by the customers.
- angra_mainyu 3y agoOne might argue that the free market is consumer-driven voting.
- wirrbel 3y agoNot all public insurances perform these elections but some, e.g. Barmer GEK, Techniker Krankenkasse, DAK-Gesundheit, Kaufmännische Krankenkasse – KKH, Handelskrankenkasse und BKK RWE and I think also AOK.
- ahartmetz 3y agoIt doesn't feel adversarial as a customer. Never did for me, never heard it from others. They aren't even regular companies - they have a special legal status. Private insurance, which is also available, is different.
- angra_mainyu 3y agoBlatantly false. I've been in Europe two decades and aside from health insurance being key to more than a few countries, private health insurance is relatively common in tandem with public health services.
- wirrbel 3y agoQuite typically there is basic service via a welfare system and additional or premium service with insurances. I pay into the public health system at a rate proportional to my income (which is more than what I would pay if I had a worse-paying job for the same service), and I have an additional dental insurance which insures my teeth.
- V__ 3y agoThe companies and researchers get access to the data with oversight but the data isn't shared. They basically get access to a server to run their analysis but can't retrieve the data.
- chopin 3y agoThere is almost zero retribution for non-compliance. This law is ripe for abuse. It's only a question when, not if, the data will become public. Conveniently, people with private insurance are exempted, which are most of our politicians and all of our public servants.
- V__ 3y agoWrong. Potential fines for a GDPR breach, under which this could fall under, are 4% of the firm's worldwide annual revenue from the preceding financial year. But there is also a criminal code in the works for violating data provided by this bill.
- belter 3y agoIncredibly naive. Easy to de-anonymize. First they come for the books, now AI practitioners come for the health data. "Estimating the success of re-identifications in incomplete datasets using generative models" - https://www.nature.com/articles/s41467-019-10933-3 https://www.nature.com/articles/s41467-019-10933-3 "...We here propose a generative copula-based method that can accurately estimate the likelihood of a specific person to be correctly re-identified, even in a heavily incomplete dataset. On 210 populations, our method obtains AUC scores for predicting individual uniqueness ranging from 0.84 to 0.97, with low false-discovery rate. Using our model, we find that 99.98% of Americans would be correctly re-identified in any dataset using 15 demographic attributes. Our results suggest that even heavily sampled anonymized datasets are unlikely to satisfy the modern standards for anonymization ..."
- awesomeMilou 3y agoA similar paper, ~3k citations, on deanonymization in sparse datasets: https://systems.cs.columbia.edu/private-systems-class/papers/Narayanan2008Robust.pdf https://systems.cs.columbia.edu/private-systems-class/papers... It's well known within the sphere that anonymization is hard and deanonymization is trivial. The original Netflix prize around their recommender system also had issues with deanonymization.
- awesomeMilou 3y agoIt is important to note the the original draft for the law does not talk about anonymizing data, but rather pseudonymizing of data. So no attemt is made at keeping identities of patients truly anonymous (which has been repeadeatly proven to be impossible in sparse datasets).
- lnxg33k1 3y agoI would hope that there is a way for the subjects themselves to be involved in the decision before their data is de-anonymised
- luplex 3y agoI think the plan is an opt-out solution. But they really don't want many people to actually opt out. And it's a legal challenge to make sure that everyone understands how and why they should opt out, even my grandma.
- lnxg33k1 3y agoHow much I love these solutions where you're stripped of your rights to privacy be default, but if you want it back you need to invest your free time in order to go through the awesome process of bureaucracy, really for these people we're just disposable beings that should be ready to give up their limited time in order to act on any bullshit politicians think about
- CaptainFever 3y agoThe issue is that an opt in solution might make the system unviable in the first place, which reduces utility for everyone. Of course, opt out should be simple, but if the majority of people don't care and the data is anonymised properly, I don't really see the issue since this is used to further the sciences.
- V__ 3y agoDo you mean the bullshit to allow innovation in healt treatments and research?
- lnxg33k1 3y agoThere is always a greater good that can be used to strip people of what they want is their right to a private and quiet life, what was yesterday, encryption in communication for safety, their medical data for research? There is always something to take away, I don't care about medical research, it is my right to have my medical data not shared with researchers, if someone else wants, then it's their right, I don't see why the default has to be to take away
- dizzydes 3y agoThis should absolutely be done everywhere. It will exponentially reduce time to cures for various diseases. The amount of red tape in academia and pharma to do simple data studies is wild...
- chopin 3y agoMy medical data is affected and I can't disagree more. As well pharma is not interested in finding cures, for obvious reasons. I am getting all the downsides with no of the upsides.
- cjblomqvist 3y agoSweden is usually ranking vet high on health care, both in results and research/innovation. One big reason for this is that we very early on gathered a lot of medical statistics on the population through the "health ministry", which have later been used in research. All this have fostered and cultivated innovation. The biggest victory however is the benefit of the results it had brought the population (and the world). If done with care this can have a big impact! Very exciting Germany is doing this!
- peteradio 3y agoDoesn't sound anonymous if it can be trivial unmasked. Sounds like the setup for one of the most egregious medical leaks of all time. Germany pwned.
- V__ 3y agoIt can't be trivially unmasked. If approved researchers get controlled access to the data with oversight, but the data itself isn't shared with the companies.
- Lichtso 3y agoThere is no such thing. Information is not a physical good that you can store in a safe. Access to it implies sharing it. At best what you can do is an API limit so that the thing is not immediately copied in its entirety. But then again, what possible statistical insights could you gain with only a small fraction?
- lifestyleguru 3y agoNext thing you see is letter from Rundfunkbeitrag suggesting to pay for the whole year in advance because your cancer doesn't have good prognosis. Nothing personal or fraudulent you know... it will be convenient.
- shankr 3y agoI don't think people understood the joke since they might not know what Rundfunkbeitrag is! Everyone outside of German has to face death and taxes. In Germany you face death, taxes and Rundfunkbeitrag.
- zx8080 3y ago> This bill allows anonymized access for researchers to all German health care data. Data from over 83 million people. Sounds like MS has just bought a relatively easy access to ~83m people's health data. For €3.2B. That's €39 per person (tax included).