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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? A

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 something like that -- and then the mods doxing you without your consent.

cogman10 5y ago
I'm 36, I weigh 190 lbs, I'm 6'1. My eyes are green. Blood pressure 120/80 (last I checked). No STDs. I drink once a week about 3 servings. I don't smoke. I don't use drugs or have a history of mental disorders. Depression runs in my family. 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?
- jjulius 5y ago
  >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?
  - throwawaygh 5y ago
    More to the point, he didn't even share it. The concern here is re-identification and he chickened out of sharing his identity.
    - NicoJuicy 5y ago
      No, he gave the path to reidentify him
      - jjulius 5y ago
        Right, which - perhaps to your point - demonstrates how a seemingly innocuous piece of data left in a dataset could be used to, with relative ease, identify that individual.
- dereg 5y ago
  First, I'm guessing that what you provided is a lot less than someone would have to provide in a medical trial. 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.
- throwawaygh 5y ago
  > So tell me, what harm have I done to myself by sharing this information? 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.
  - cogman10 5y ago
    Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information". 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).
    - jjulius 5y ago
      >... my name with my medical history... >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.
      - cogman10 5y ago
        Other nations have more open laws about sharing medical data than the US. (I believe Iceland? Greenland? One of those island nations has genetic ancestry data for all citizens). 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.
- rvnx 5y ago
  In practice, the person can be bucketed in an age, height and weight group and then the problem is solved and there is a constructive dataset. 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
  - jjulius 5y ago
    I'm genuinely curious - OP has commented about their direct work with pharmaceutical companies on datasets like what we're discussing. Do you have any history of direct work with similar/same datasets yourself?
- actusual 5y ago
  > So tell me, what harm have I done to myself by sharing this information? 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.
- ModernMech 5y ago
  > I don't use drugs or have a history of metal disorders. 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.
  - rvnx 5y ago
    Don't they ask in the US when you apply for a job if you have any significant disability / disease ? I remember seeing that in many of the job application forms (which I find strange actually).
    - rsfern 5y ago
      I don’t think they are allowed to ask those questions. They certainly aren’t allowed to discriminate in hiring or employment based on disabilities https://www.eeoc.gov/laws/guidance/your-employment-rights-individual-disability https://www.eeoc.gov/laws/guidance/your-employment-rights-in...
      - geoduck14 5y ago
        >I don’t think they are allowed to ask those questions They are DEFINITELY not allowed to ask.
        rvnx 5y ago
        for example, from a startup interview process: Calico, subsidiary of Alphabet: https://www.calicolabs.com/careers?gh_jid=5785761002 https://www.calicolabs.com/careers?gh_jid=5785761002 > "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."
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
mchusma 5y ago
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.
- sjtindell 5y ago
  Just curious, do you have anything particularly embarrassing to share? Easy to say when everyone on Tinder can’t Google your name and get “alcoholic with herpes”. I would also be open to share if there was tangible benefit today because I’m healthy. But in the future who knows.
- throwawaygh 5y ago
  That's admirable, but participants may not share your feelings and they have rights.

cogman10 5y ago

I'm 36, I weigh 190 lbs, I'm 6'1. My eyes are green. Blood pressure 120/80 (last I checked). No STDs. I drink once a week about 3 servings. I don't smoke. I don't use drugs or have a history of mental disorders. Depression runs in my family. 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?

jjulius 5y ago
>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?
- throwawaygh 5y ago
  More to the point, he didn't even share it. The concern here is re-identification and he chickened out of sharing his identity.
  - NicoJuicy 5y ago
    No, he gave the path to reidentify him
    - jjulius 5y ago
      Right, which - perhaps to your point - demonstrates how a seemingly innocuous piece of data left in a dataset could be used to, with relative ease, identify that individual.
dereg 5y ago
First, I'm guessing that what you provided is a lot less than someone would have to provide in a medical trial. 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.
throwawaygh 5y ago
> So tell me, what harm have I done to myself by sharing this information? 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.
- cogman10 5y ago
  Frankly, putting up my name with my medical history has far less to do with having the two linked and far more to do with "I'd rather not have a future employer have an easy link to my social media information". 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).
  - jjulius 5y ago
    >... my name with my medical history... >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.
    - cogman10 5y ago
      Other nations have more open laws about sharing medical data than the US. (I believe Iceland? Greenland? One of those island nations has genetic ancestry data for all citizens). 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.
rvnx 5y ago
In practice, the person can be bucketed in an age, height and weight group and then the problem is solved and there is a constructive dataset. 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
- jjulius 5y ago
  I'm genuinely curious - OP has commented about their direct work with pharmaceutical companies on datasets like what we're discussing. Do you have any history of direct work with similar/same datasets yourself?
actusual 5y ago
> So tell me, what harm have I done to myself by sharing this information? 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.
ModernMech 5y ago
> I don't use drugs or have a history of metal disorders. 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.
- rvnx 5y ago
  Don't they ask in the US when you apply for a job if you have any significant disability / disease ? I remember seeing that in many of the job application forms (which I find strange actually).
  - rsfern 5y ago
    I don’t think they are allowed to ask those questions. They certainly aren’t allowed to discriminate in hiring or employment based on disabilities https://www.eeoc.gov/laws/guidance/your-employment-rights-individual-disability https://www.eeoc.gov/laws/guidance/your-employment-rights-in...
    - geoduck14 5y ago
      >I don’t think they are allowed to ask those questions They are DEFINITELY not allowed to ask.
      - rvnx 5y ago
        for example, from a startup interview process: Calico, subsidiary of Alphabet: https://www.calicolabs.com/careers?gh_jid=5785761002 https://www.calicolabs.com/careers?gh_jid=5785761002 > "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."

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

mchusma 5y ago

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.

sjtindell 5y ago
Just curious, do you have anything particularly embarrassing to share? Easy to say when everyone on Tinder can’t Google your name and get “alcoholic with herpes”. I would also be open to share if there was tangible benefit today because I’m healthy. But in the future who knows.
throwawaygh 5y ago
That's admirable, but participants may not share your feelings and they have rights.