6 ms·

Something super creepy that happened to me recently: a hospital where I've been to a few months ago called me and asked me to participate in some DNA analysis p

by bartwr 3y ago

Something super creepy that happened to me recently: a hospital where I've been to a few months ago called me and asked me to participate in some DNA analysis program. They said "oh and the best part? You don't need to do anything! We will use blood samples we collected the last time." I obviously declined, but it was a huge wtf to me - they stored biological samples associated with me without informing me and can do a post hoc DNA analysis. This is just insane and a proof of how non existent any privacy laws in the US are. (In EU they cannot freeze any samples without consent and unfrozen ones are ok for at most a few days)

me_me_me 3y ago
Well they did call you and tried to trick you into letting them use it. But assuming they obey the law they did not used your samples. So there are privacy laws in place? Also they could have been cleaning old results/samples and this was one step.
- bartwr 3y ago
  How do I know they didn't use them? They already did something with my biological samples (storing for a different purpose than when they drew my blood) without my consent nor informing me. And also - could eg. police use it?
  - me_me_me 3y ago
    I am not sure, only guessing. But why would they ask for permission in the firs place? > They already did something with my biological samples I can only guess you were tested for something in the hospital. Samples are sent to the lab (separate department) to be tested. If additional tests need to be perform they can use the blood they already received. The samples are kept for ready availability if additional tests are requested by doctor. Doctors dont care how its done, they dont have time to inform lab patient x is out home. After some time they need to be destroyed - due to expiry date on it. Before destroying the lab contacted you and asked for dna permission. > And also - could eg. police use it? I don't know that. But you might want to check how medical data is protected in your jurisdiction.
    - dekhn 3y ago
      They asked for permission because if you want to use data a hospital already has stored for another use, you need to contact the patient to get additional consent (you already gave them consent to collect and keep the sample). See https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/index.html https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq... under "Should the initial consent ... be repeated or supplemented?" and I think this is the law: (45 CFR 46.116(b)(5)).
- dekhn 3y ago
  Calling to get more consent for something that was already under consent is not a trick and it's not against the law for them to use the samples. THere isn't anything nefarious going on here. Just scientific research with medical data.
kzrdude 3y ago
Sweden has a registry of blood samples of every person born in sweden since 1975: https://sv.wikipedia.org/wiki/PKU-registret https://sv.wikipedia.org/wiki/PKU-registret (Swedish only wiki page) Predictably?, amusingly? police never had access to this data, until a government minister was murdered in 2003, when a sample from the suspect was retrieved. From what we know it has not been used since. So we can be cynical, but under the circumstances, the police use of the registry has not yet taken hold and is guarded by the courts..
- zlg_codes 3y ago
  Boy, that "yet" reaaaally makes me feel comfortable trusting government with information it can use to kill entire families.
  - kzrdude 3y ago
    It is interesting how that 'single exception in 2003' really erodes trust in the whole thing. It's very hard to come back from that.
  - kjkjadksj 3y ago
    If the government wanted you gone there wouldn’t be this song and dance about getting dna data from a blood bank. They’d just kill you and that would be that.
    - zlg_codes 3y ago
      They can barely agree on a budget. They wouldn't be able to unify against the public, they're too dysfunctional. You'd need a President willing to defy his oath and two other branches on board with him. Not happening.
      - kjkjadksj 3y ago
        Congress is not the agency that does the killing. More efficient ones with practically zero oversight do. See Frank Olson for an example, we only know about that after mkultra was revealed in CIA abuse investigations. His family still is fighting for justice some 60 years after his assassination.

by bartwr 3y ago

me_me_me 3y ago

Well they did call you and tried to trick you into letting them use it. But assuming they obey the law they did not used your samples. So there are privacy laws in place? Also they could have been cleaning old results/samples and this was one step.

bartwr 3y ago
How do I know they didn't use them? They already did something with my biological samples (storing for a different purpose than when they drew my blood) without my consent nor informing me. And also - could eg. police use it?
- me_me_me 3y ago
  I am not sure, only guessing. But why would they ask for permission in the firs place? > They already did something with my biological samples I can only guess you were tested for something in the hospital. Samples are sent to the lab (separate department) to be tested. If additional tests need to be perform they can use the blood they already received. The samples are kept for ready availability if additional tests are requested by doctor. Doctors dont care how its done, they dont have time to inform lab patient x is out home. After some time they need to be destroyed - due to expiry date on it. Before destroying the lab contacted you and asked for dna permission. > And also - could eg. police use it? I don't know that. But you might want to check how medical data is protected in your jurisdiction.
  - dekhn 3y ago
    They asked for permission because if you want to use data a hospital already has stored for another use, you need to contact the patient to get additional consent (you already gave them consent to collect and keep the sample). See https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/index.html https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq... under "Should the initial consent ... be repeated or supplemented?" and I think this is the law: (45 CFR 46.116(b)(5)).
dekhn 3y ago
Calling to get more consent for something that was already under consent is not a trick and it's not against the law for them to use the samples. THere isn't anything nefarious going on here. Just scientific research with medical data.

kzrdude 3y ago

Sweden has a registry of blood samples of every person born in sweden since 1975: https://sv.wikipedia.org/wiki/PKU-registret https://sv.wikipedia.org/wiki/PKU-registret (Swedish only wiki page) Predictably?, amusingly? police never had access to this data, until a government minister was murdered in 2003, when a sample from the suspect was retrieved. From what we know it has not been used since. So we can be cynical, but under the circumstances, the police use of the registry has not yet taken hold and is guarded by the courts..

zlg_codes 3y ago
Boy, that "yet" reaaaally makes me feel comfortable trusting government with information it can use to kill entire families.
- kzrdude 3y ago
  It is interesting how that 'single exception in 2003' really erodes trust in the whole thing. It's very hard to come back from that.
- kjkjadksj 3y ago
  If the government wanted you gone there wouldn’t be this song and dance about getting dna data from a blood bank. They’d just kill you and that would be that.
  - zlg_codes 3y ago
    They can barely agree on a budget. They wouldn't be able to unify against the public, they're too dysfunctional. You'd need a President willing to defy his oath and two other branches on board with him. Not happening.
    - kjkjadksj 3y ago
      Congress is not the agency that does the killing. More efficient ones with practically zero oversight do. See Frank Olson for an example, we only know about that after mkultra was revealed in CIA abuse investigations. His family still is fighting for justice some 60 years after his assassination.