171–180 of 257 posts
So this editorial is kind of nutty. To give you an idea, this is kind of like asking banks to release customer account data to the public.
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What is your full name and address? Age? Weight? Height? Eye color? Blood pressure? What STDs do you have, if any? How often and how much do you drink? Smoke? Any history of drug use? Mental disorders? What about your family? 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…
I'll just note that I have no problem with all this information being public for health research. I'd take privacy hits all day long in return for better cures, health, and longevity.
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I can only recommend this article about bmj: https://respectfulinsolence.com/2021/11/15/wtf-happened-to-t...
Yup. I'm not sure how many non anti vax people who comment in support of BMJ actually read the original article. If you are them please reveal yourself and explain how you found nothing wrong with the original article. Most of these comments in the threads just seem like tired knee jerk anti big media / anti vax memes.
It's unfortunate that the anti-vaxx idiots are misinterpreting or decontextualizing their content, but that's the anti-vaxx's fault and it's what they've always done.
I’m a software consultant for Pharma companies and have worked on projects that used the same kind of study design as the Pfizer COVID vaccine (Kaplan-Meier). “Raw data” is submitted to the FDA in the CDISC format. This format contains a lot of pretty sensitive medical information, including which diseases a patient has, their medical history, what drugs they take, etc. This is supposed to be anonymized, but if the p…
What is the specific basis for your belief that patient re-identification is possible? The federal government has provided clear guidance on de-identification which should eliminate that as a serious concern. https://www.hhs.gov/hipaa/for-professionals/privacy/special-...
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>And ? 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.
Re-identify based on what ? There are no databases that you can link against if you strip out the major identifiers (like city and date of birth). It's for the benefit of patients, and this raw data is already available, but under a loose NDA for commercial partners and researchers...
Isn't that provably untrue? https://bits.blogs.nytimes.com/2015/01/29/with-a-few-bits-of...
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What is your full name and address? Age? Weight? Height? Eye color? Blood pressure? What STDs do you have, if any? How often and how much do you drink? Smoke? Any history of drug use? Mental disorders? What about your family? 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…
It looks like you are trying to drift the intent and scope of the dataset disclosure. 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 (b…
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.
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> Because it's not That is misleading at best. It absolutely is part of an ongoing clinical trial regardless us if it is authorized for emergency use. How many people who were given the vaccine were told that it is part of an ongoing clinical trial, authorized for emergency use, and the data from the trial won’t be available for years? I suspect a very small percent.
> It absolutely is part of an ongoing clinical trial regardless us if it is authorized for emergency use. It is for the people enrolled in an actual clinical trial. It's not for people outside of the clinical trial using it under either the EUA or the subsequent full authorization. > How many people who were given the vaccine were told that it is part of an ongoing clinical trial, 100% of those for whom that was true…
See section e-1-A-ii here: https://www.law.cornell.edu/uscode/text/21/360bbb-3
(ii)Appropriate conditions designed to ensure that individuals to whom the product is administered are informed—
(I)that the Secretary has authorized the emergency use of the product;
(II)of the significant known and potential benefits and risks of such use, and of the extent to which such benefits and risks are unknown; and
(III)of the option to accept or refuse administration of the product, of the consequences, if any, of refusing administration of the product, and of the alternatives to the product that are available and of their benefits and risks.
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The thing is; in practice, how can you re-id someone that has a very rare medical condition if you don't already know that the person has this very rare medical condition ?
It's that knowing that someone has a rare medical condition that someone willingly shared can be a signal to find out other things in their medical records that they may not have wanted to share with others they know.
https://vaers.hhs.gov/data/datasets.html
This is the type of raw records we are talking about, and they carry useful information.
Yes, maybe the dates could be anonymised better, if I know the age of someone, and I know when he got his vaccine precisely, and when he got his MRI and why he did it, then maybe I can find and connect back the record. But how likely this attack can be done in practice, and why would you do it to someone who already disclosed part of their records, plus how does it scale ?
However, the benefits are really present, it's not sharing just for the sake of sharing but to bring advance to the global research and knowledge of medicine.
In practice, who is it ? I don't know, who can know ? Doctors who can tie it to other pieces of information that we don't have...
However, in the meantime, the researchers and doctors who don't have these foreign keys, they can totally do interesting and useful discoveries about drug interactions and vaccine side-effects.
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> Because it's not That is misleading at best. It absolutely is part of an ongoing clinical trial regardless us if it is authorized for emergency use. How many people who were given the vaccine were told that it is part of an ongoing clinical trial, authorized for emergency use, and the data from the trial won’t be available for years? I suspect a very small percent.
Trial participants sign agreements to be part of the trial and usually receive compensation or free medical treatment in exchange for being part of the trial and continued health monitoring. This is a hard rule from the FDA, and failure to do so is subject to criminal liability. Individuals receiving drug under an EUA are not part of a clinical trial, regardless of what you think of the drug.
I’m a software consultant for Pharma companies and have worked on projects that used the same kind of study design as the Pfizer COVID vaccine (Kaplan-Meier). “Raw data” is submitted to the FDA in the CDISC format. This format contains a lot of pretty sensitive medical information, including which diseases a patient has, their medical history, what drugs they take, etc. This is supposed to be anonymized, but if the p…
There are ways to inject randomness into a dataset, giving subjects plausible deniability without compromising the integrity of the outputs. See https://pair.withgoogle.com/explorables/anonymization/ for a nice example.
Bottom line is, there are ways to share such data safely. Whether the data owner cares enough to do the extra work, especially if doing so removes a competitive advantage, is another story.