And ?
Where is the bad thing to open a dataset of comorbidities and related / suspected effect of vaccines / medications ?
Where is the bad thing in you posting this information here right now?
Actually, that's not even analogous. A better analogy would be you post all this info under a pseudonym -- e.g., "rvnx" or something like that -- and then the mods doxing you without your consent.
I only really hesitate to post full name and address but, frankly, I'm sure given my user handle it wouldn't be terribly hard for someone to find both of those.
So tell me, what harm have I done to myself by sharing this information?
You're comfortable sharing it, that's cool! Is your neighbor? Your friend? Your cousin? Should they be obligated to divulge their own medical information just because you're fine divulging yours?
Second, demonstrating your willingness to describe yourself on a public forum is a lot different than someone expecting confidentiality when participating in medical trials. Most people do not have your level of comfort disclosing medical details. Furthermore, if a company were to break that trust, why would anybody participate in medical trials? The harm is not to you, it is to society.
None, and yet you still aren't willing to put your name behind the statement "I'm healthy as a fiddle and never use drugs except the occasional beer".
Also -- and this will apparently come as a surprise to you -- people who have STDs, abuse drugs/alcohol, or have genetic disorders in their family don't necessarily want that info shared on the internet. Shocking, right?!
Apparently pseudonymous internet griping is an essential right but participants in medical trials should -- post-facto -- have their entire medical history shared in a wy that's at significant risk of reidentification.
Oh genetic disorders, you didn't ask about that earlier. My family is a carrier for cystic fibrosis. Is that something that's supposed to be super terrible to share?
I'm not the GP, but frankly I think it's a little crazy how worried everyone is about being identified through round about methods in medical data. Google has a far better bead on exactly who I am than any doctor and, frankly, I'm far more worried about that advertising profile than I am about the "what if's" of my medical data being shared between hospitals and doctors (and potentially being leaked).
>My family...
>... I'm far more worried about that advertising profile than I am about the "what if's" of my medical data...
Again - yours. It's great that you're fine with your data being public, but as is evidenced by the way certain posts in this comment chain are being down/upvoted, clearly many other people share the opposite view and would prefer their data remain private.
AFAIK, the world hasn't ended and they aren't living in a dystopia because their medical information is so well documented. On the contrary it has served to stop the spread of genetic disorders and aid in medical research.
Certainly I personally don't have these hangups about privacy. I think it's weird that society has created them. Pre-HIPAA that wasn't the case and it wasn't exactly seen as major breaches of privacy for doctors/nurses to talk relatively openly about diseases their patients had. The sanctimony of medical data is a recent development practically unique to the US.
I'm not advocating that we broadcast to everyone details of every medical checkup. I am, however, saying that we shouldn't have nearly the level of restrictions we have around sharing medical information, particularly between medical institutions doing research.
Do you realize that people were murdered because of their medical history? Like mental illness and ADD were reasons for killing people in America just a couple of decades ago?
And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development. Imagine your village elder coming to you and telling you that your baby needs to go in a bucket of water because he has club feet. That is happening. Today.
Citation needed.
You realize a couple of decades ago was 2000, right? The closest I can think of what you might be talking about is the eugenics programs ran up to the early 1960s. Even so, those weren't executions, but rather sterilizations. Barbaric, but not murder.
> And currently, today there places where it is acceptable to drown your own babies if they demonstrate delayed development.
And what part of making health recorders more accessible would influence that one way or another? Do you think it's the fact that heath records are hard to access that protects us from parents murdering their children? How are other nations in the EU managing to not kill all their kids for defects!
So, to be clear, your right to post random ass thoughts on the internet under a pseudonym is sacred... but it's totally reasonable to RENEGE on EXISTING privacy agreements with real world actual existing real human patients about intimate health records?
Just so long as we're clear about the enormous esteem you hold yourself in and the absolute contempt you have for others' privacy...
Address and name are not necessary.
- Person 30-35, living in California, has history of obesity, suffers from type II diabetes, under treatment of med A, and med B.
- first dose: Jan 2021
- second dose: March 2021
Medical outcome: ZZZ
This is irrelevant.
The conditional probability of my willingness to post this information, given your willingness to post this information, is equal to the the probability of my willingness to post this information. P(X) = P(X|Y). This means that just because you are okay with it, I'm not...and additional people being okay with it doesn't change my opinion regardless of harm.
Very happy for you, but if you did, you might have learned by now that people (and employers) can treat you very differently after they find out you're an addict or have a mental disorder, and it's best not to telegraph that information to everyone except close friends you can trust.
https://www.eeoc.gov/laws/guidance/your-employment-rights-in...
They are DEFINITELY not allowed to ask.
> "We are required to measure our progress toward having at least 7% of our workforce be individuals with disabilities. To do this, we must ask applicants and employees if they have a disability or have ever had a disability. Because a person may become disabled at any time, we ask all of our employees to update their information at least every five years.
Identifying yourself as an individual with a disability is voluntary, and we hope that you will choose to do so."
Just stop. This is embarrassing.
For example, having the list of symptoms, medications and even (just an imaginary example) pulmonary X-Ray or also on the chest having an open dataset of MRI pictures with the age of the patient, history of diseases would considerably help and there is no way you can link it back unless you know the history of the patient already (but then, what's the issue; none because you already know the information).
Plus if you ask the person about it, I really don't see the problem :|
Yes in theory, there is a possibility that someone has a database somewhere of all the boobs spacing, and can determine approximate lungs size, try to guess what could be the likely owner of a lung picture, etc etc, all of that for what ?
The person who is going to benefit from it, is clearly the COVID-19 researchers, and the end-patient.
No. Intent doesn't matter. That's the whole point.
To wit: there's a reason that reidentification attacks are called attacks! No one intends to be hacked, and writing a program that you intend to be secure doesn't imply that the program is in fact secure. So too with anonymization.
> having an open dataset of MRI pictures
But we're not talking about MRI pictures, are we?
OP strongly believes that, in this case, there is enough information to re-identify patients. I agree.
Plan A: - sit and do nothing "it's impossible to release any data, too bad, we'll never know!"
Plan B: - "we have a risk that a few % of ppl may be identified if we already know their medical history/details, it's impossible to release any data, too bad!"
Plan C: - "we remove the biggest identifiers to make sure the majority of the people cannot be reasonably identified, this is going to take a few days or weeks of work but will bring benefits to the overall population and transparency on the treatments"
I'm fully supportive of the right to pseudonymous speech, but it strikes me that you are in an awfully awkward position of speaking anonymously while demanding that you should have access a trove of patient history without signing any sort of data use agreement and without even the most basic step of getting permission from the people whose patient history you insist on seeing.
Asking the user:
"This record is going to be shared publicly, do you agree to share this information (without revealing your name and address) ?
> [...]
This information can help researchers, doctors and people interested into science to discover new information about drugs and diseases interaction."
We learnt that somewhere there is a man/woman that is depressed and has weight management issue.
We can take policy actions in order to improve the situation and monitor how this affects life of people (e.g. how much antidepressants are used in a year, are the food policies effective, what conditions are often linked to sudden cardiac arrest, etc).
And "Rebecca", nobody knows it's her, except herself, and those to whom she decide to publicly disclose her conditions (e.g. on social networks or to specialists).
Asking people in the study if it’s OK to release their data means the resulting data set is skewed. People with certain conditions and other variables will be more or less likely to agree, leaving a non-representative sample of the actual study.
It will no longer be random.
Actually, set aside consent entirely.
The problem is NOT "how do we de-anonymize". That is super easy.
The problem is "how do we de-anonymize IN A WAY THAT LEAVES RESULTS OF RELEVANT STATISTICAL TESTS INVARIANT". Much harder. Remove a bunch of probably non-random points and make any logisitic regression on that dataset return the same result within some delta. There are trivial impossibility theorems. Really, really trivial. "Left as freshman exercise and if you can't some up with an example maybe step back and stop talking about this topic" trivial.
Now, add back consent. "how do we delete a subset of data that is likely not uniformly distributed with respect to risk variables and also de-anonymize the remaining subset of data.... AGAIN, IN A WAY THAT LEAVES RESULTS OF RELEVANT STATISTICAL TESTS INVARIANT". The position is untenable.
That is WAY harder that it sounds. When you add public disclosure of mismatch between results on public data and private (full) data things are even harder.
Specifically: suppose an independent researcher determines X is true via statistical test Y on the public dataset. Officials must respond, and say "True" or "False".
A small number of queries via this process can be used to infer data that makes re-identification possible. And there will be many more than a small number of queries, including from adversarial agents specifically designing queries to maximize information gain based on previous (public) revelations.
This is a game, in the game theory sense, in which the goal is to exploit the mathematical properties of statistical tests and social dynamics to force public revelations of binary assessments that yield information about individual cells or sets of cells and make re-id possible.
Have you actually studied this stuff, designed de-anonymization protocols, developed re-id threat models, thought about privacy budgets in public disclosure mandates, and at last put your reputation and your customer's privacy on the line when asserting that your statistical methods are resilient against attacks? Or are you just a jawboning know-it-all anonymous coward without any actual experience balancing privacy against public disclosure?
To be honest, all of your posts read like "just stop writing vulnerable software and then there will be no more hackers mmmkay?"
If you were to have access to my MRIs you could almost certainly identify me based on physical characteristics which can be seen in my MRI data which would correlate with data found on social media where I've sometimes generally discussed my medical conditions without going into specifics. There are MRIs for conditions I haven't discussed, in addition to the identifying ones I have.
There are a lot of people with fairly unique medical conditions and body situations (eg: missing a limb, surgical implants). The gap between "I got hurt in this way" and "here's the MRI scans of my body in detail along with other lab notes and other unrelated and possibly extremely embarrassing conditions" is huge
Until/unless patients agree otherwise.
I.e., the status quo.
Otherwise it's sort of like my 10-year-old wanting to help me replace an engine in a car. It's important to let him do it so he can learn but it's likely going to take me much longer to on-board him and get him up to speed than if I did it myself.
I have deposited datasets with full transcriptome data, which you can use to infer most of the genome in a straightforward manner, from clinical trials. In that case, you simply use off-the-shelf tools to anonymize datasets by flipping lots of SNPs. Additionally, raw data is made accessible only through an ethics committee. Summary counts from transcriptomes are publicly available, though. There are equivalent practices for other biomarkers.
I must say The British Biomedical Journal (BMJ) is really spearheading all transparency efforts. They have been publishing lots of inconvenient truths for many years. For example, they reported some fairly serious conflicts of interest where professors from Oxford are getting huge "consulting" fees from pharma. And they pretty much publish any reasonable letter to the editor. Nature, Science and Cell, on the other hand, are heavily biased.
Right.
1. I'm not sure you understand the extreme position being taken by rvnx in this thread.
2. Presumably the patients agreed that their transcriptome data could be shared in this way, and you didn't change your data handling post-facto without their consent.
Said agreements have previously gone through ethics committees which tend to be extremely strict. They are rarely changed afterwards, since this requires agreement of patients, which is impractical to obtain in all but tiny studies.
The only exception I can think of is Scandinavia. They have national registries where all census information, plus electronic health records, is available to researchers by default, unless you explicitly opt out. Their philosophy is that this is a negligible reduction in privacy, in exchange for medical progress. I must note said records are not publicly open, you need to apply for access.
As a consequence, Sweden and Denmark have some of the best epidemiological research in the world and they've been able to spot pretty odd correlations (e.g. ibuprofen and male infertility).
I have had helped draft at least 6 studies with materials coming from our own clinical trials and deposited all data myself. Went through institution review boards without an issue, just like many other equivalent studies.
Perhaps your experience is different because of location? I'm referring to EU.
AFAIK this is also possible in the US. Probably more hoops to jump through? I don't know anything about the EU. (But also this discussion is basically totally unrelated to the original article or this thread.)
Your comment is somehow relevant to the article and insightful wrt the topic but also off-topic in this thread.
The type data you are suggesting should be shared -- and, more importantly, the consent assumptions -- are not related to the current discussion.
Facial recognition works perfectly fine on MRI face renders. You speak awfully confidently about a problem you seem to have very little experience in.
As with cryptography: Anyone can come up with suggestion that they themselves can't find an attack against.
FYI, high-res face MRI are just pictures of the face. So yes, if you share the picture of the face of someone, they may find your identity back, but it's not specific to MRI.
Dealing with any medical record that contains pictures of patient you should take additional steps to prevent identification, and face is the most sensitive part of the body as it can be most likely identified.
If tomorrow there are publicly available anonymised close-up pictures of cardiac MRI, it'd be extremely challenging to map them to their real owner with a 100% certainty but the discoveries it could lead to are very exciting (and the same with skin cancer pictures for example, or suspiciouses moles)
What's not to get? OP said:
>... I strongly believe there is enough information to re-identify patients.
Their concern is that just dumping raw data like this into the public would be a massive violation of privacy for countless individuals.
It's for the benefit of patients, and this raw data is already available, but under a loose NDA for commercial partners and researchers...
The fact that you poo-poo this question is telling. Preventing re-identification attacks is incredibly subtle and sometimes impossible. Removing "city and date of birth" is nowhere near sufficient.
> this raw data is already available, but under a loose NDA for commercial partners and researchers...
Yes. It's available to people who have their real identities tied to their access and can be sued into oblivion or possibly even prosecuted for wanton misuse of the data. Surely you see how this is different from throwing it on a public s3 bucket, right?
It reminds me the FDA saying they can't release the COVID-19 documents because reviewing 44'000 documents would take 50 years.
It didn't take 50 years to produce them...
Yes there is some effort needed to anonymize reasonably the data but it's not an impossible task. It's a question of motivation.
Here, clearly, the labs and administration don't really want to put efforts into that.
And, yes, I think public data on this sort of stuff is important and should be properly resourced.
I think:
Step 1. ASK PERMISSION before changing the way data is handled.
Step 2. Share full datasets more generously, but still gated by use and handling agreements. This probably means a private citizens without ethics research training and a supporting it dept can’t get a copy and peruse it on their personal laptop, but also that a truly enormous number of researchers would be able to access the data.
The gold standard of a CSV in a public s3 bucket shouldn’t be the enemy of good enough.
And of course raw data like this could benefit patients, but keeping access to raw data limited also benefits patients. Sure, the data is readily available under a loose NDA, but it's available to people who have explicit knowledge of the requirements around handling sensitive, identifiable data. Average Joe's and Jane's do not have this knowledge, and bad actors just plain don't give a shit.
And no, this isn’t under a “loose” NDA. This would be covered by HIPAA, which tends to be un-subtle about violations.
0 - https://www.cs.princeton.edu/~arvindn/publications/de-anonym...
Isn't that provably untrue? https://bits.blogs.nytimes.com/2015/01/29/with-a-few-bits-of...