Hacker News Reader

Comment by V__ | Hacker News Reader

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.

View on HN

Sounds 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?

>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.

The 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.

It 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.

" Insurance companies in Germany are also not benevolent. " You know, that the leaders of public insuarances are voted by the customers.

One might argue that the free market is consumer-driven voting.

Not 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.

It 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.

Blatantly 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.

Quite 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.

No, I mean full-blown private health insurance. In France, Belgium and Netherlands it's very common (and I think mandatory in NL).

Outside of those countries, it's still somewhat common to have private health insurance (not just dental), such as Mapfre or Regina Maria. Heck, even in Germany something like 1 out of 10 people have private health insurance (again, not just dental).

The "civilized world" does not, however, have universal life insurance nor disability insurance that would cover the full standard of living. Those are, at least in Germany, privatized, and companies could benefit a lot from having access to some extra data.

I'm not sure that getting caught using such data would be sufficiently bad news to be not worth it.

No, because medial data can also be used for things like life insurance, insurance against loss of earnings caused by sickness, and probably a lot of other things.

The 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.

There 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.

Wrong. 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.

Incredibly 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

"...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 ..."

A similar paper, ~3k citations, on deanonymization in sparse datasets:

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.

It 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).

Sweden 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!

When it comes to digitalization and privacy in Germany, no good intention goes unpunished.

But there is nothing about "digitalization and privacy" in this law. They will collect the data and "sell" it to the lowest bidder (Palantir for example).

This 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...

My 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.

Next 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.

I 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.

Doesn'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.

It 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.

There 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?

They get access to servers and/or data centers where they can run their analysis. Its trivial to control for data egress in such a scenario.

None of this is mentioned in that law. The worst thing that can happen is getting excluded from the data for some time.

I would hope that there is a way for the subjects themselves to be involved in the decision before their data is de-anonymised

I 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.

How 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

The 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.

Do you mean the bullshit to allow innovation in healt treatments and research?

There 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

When using public healthcare resources and anonymized data?

The change in what’s happening is important. The original social contract just assumed it would always be private. Now that’s changing. Possibly if the notion was built in that the public health system would reserve the right to effectively monetise your data… the entire genesis of it would have happened differently. I’m not saying it’s wrong. I’m saying changing the rules halfway through means you can’t appeal to the original contract.

Rules change all the time around tax and healthcare. This is also not about directly monetizing data but to benefit the recipients of public healthcare which is a lot more than just finding revenue sources.

As said before, there is always a benefit that needs removing the right to privacy, I was not saying it is wrong, I was saying to make it opt in so that people can be part of the benefit by choice if they want to

Not how this works. If the benefit is better healthcare, there is no way to withold that from people not opted in.

> When using public healthcare resources and anonymized data?

The problem is that data is not anonymized. And the companies using these data are using it for other purposes like selling targeted health data.

Consider how much more effective an opt out system for organ donation is than an opt in system.

> I would hope that there is a way for the subjects themselves to be involved in the decision before their data is de-anonymised

No. Unless you don't want medical treatment.

> 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).

Reply on news.ycombinator.com