3 ms·

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 i

by rvnx 5y ago

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 (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.

throwawaygh 5y ago
> It looks like you are trying to drift the intent and scope of the dataset disclosure. 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.
- rvnx 5y ago
  Ok then next steps: 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"
  - throwawaygh 5y ago
    Why don't you include a step where you ask patients if they're ok with their medical history being put in a public s3 bucket? 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.
    - rvnx 5y ago
      Ok, why not, this is what I propose: 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."
      - ceejayoz 5y ago
        Cool. Now you’ve got a whopping pile of selection bias added to the dataset.
        rvnx 5y ago
        Yeah, useful selectors for researchers, and still no identity. 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).
        ceejayoz 5y ago
        No, you’re missing the point. 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.
throwaway09223 5y ago
There's no drift, OP stated this clearly in the original post when he wrote: "I strongly believe there is enough information to re-identify patients" 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
- rvnx 5y ago
  Fair enough, what do you propose to give access to people who want to help ?
  - throwawaygh 5y ago
    A strict data use agreement signed by a real person with tangible assets and reputation at stake, outlining the acceptable and unacceptable uses of the data and well as appropriate data handling rules. Until/unless patients agree otherwise. I.e., the status quo.
  - jacquesm 5y ago
    Go to work in the field.
  - bshipp 5y ago
    Anonymizing datasets is time consuming and would take resources away from the FDA to implement, instead of doing it themselves. I have no doubt people want to help but the only way they really could would be to sign a contract with someone who is allowed to share that data internally, and operate in a embargoed situation (such as on-premise) under an NDA. 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.
MauranKilom 5y ago
> 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 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.
- rvnx 5y ago
  True, true, pictures are even one level higher in terms of difficulty to anonymise right (and that's not even what they are asking, here it's about structured text records). 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)

by rvnx 5y ago

throwawaygh 5y ago

> It looks like you are trying to drift the intent and scope of the dataset disclosure. 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.

rvnx 5y ago
Ok then next steps: 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"
- throwawaygh 5y ago
  Why don't you include a step where you ask patients if they're ok with their medical history being put in a public s3 bucket? 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.
  - rvnx 5y ago
    Ok, why not, this is what I propose: 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."
    - ceejayoz 5y ago
      Cool. Now you’ve got a whopping pile of selection bias added to the dataset.
      - rvnx 5y ago
        Yeah, useful selectors for researchers, and still no identity. 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).
        ceejayoz 5y ago
        No, you’re missing the point. 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.

throwaway09223 5y ago

There's no drift, OP stated this clearly in the original post when he wrote: "I strongly believe there is enough information to re-identify patients" 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

rvnx 5y ago
Fair enough, what do you propose to give access to people who want to help ?
- throwawaygh 5y ago
  A strict data use agreement signed by a real person with tangible assets and reputation at stake, outlining the acceptable and unacceptable uses of the data and well as appropriate data handling rules. Until/unless patients agree otherwise. I.e., the status quo.
- jacquesm 5y ago
  Go to work in the field.
- bshipp 5y ago
  Anonymizing datasets is time consuming and would take resources away from the FDA to implement, instead of doing it themselves. I have no doubt people want to help but the only way they really could would be to sign a contract with someone who is allowed to share that data internally, and operate in a embargoed situation (such as on-premise) under an NDA. 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.

MauranKilom 5y ago

> 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 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.

rvnx 5y ago
True, true, pictures are even one level higher in terms of difficulty to anonymise right (and that's not even what they are asking, here it's about structured text records). 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)