4 ms·

The baby did not consent to sharing its data.

by uoaei 4y ago

asdff 4y ago
No, but its legal guardians probably did
- giantg2 4y ago
  They probably were not informed of the uses. The nurse probably told them they're using it to screen for defects. I guarantee they made no mention of the retention nor law enforcement uses.
  - Beltalowda 4y ago
    If I buy a knife at the local shop then I don't explicitly consent to sharing purchase data with law enforcement either. But I don't think it's especially controversial that law enforcement nonetheless obtains this data with the appropriate warrant and such in the process of solving a crime.
    - imoverclocked 4y ago
      Perhaps but, "informed consent" within the medical industry is a lot different than at a knife shop.
    - jonas21 4y ago
      One of the issues in this case is that police did not have a warrant at the time they obtained the baby's DNA sample. They were unable to get one because they did not have probable cause that any individual had committed the crime. And certainly the baby could not have committed the crime, which occurred before it was born. It was only after the state lab gave them the baby's DNA sample that they were able to establish probable cause and get a warrant for the father.
  - asdff 4y ago
    The nurse probably handed them a form written by the state that outlined all of this. California puts this in 4 easy to read pages which includes mention of law enforcement uses: https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20Library/NBS%20Documents/BiobankBloodSpotFactSheet.pdf https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20...
    - anigbrowl 4y ago
      And it emphasizes confidentiality and says it's hard and rare for law enforcement to get access to this information. People are going to imagine it only applies in cases like their child being kidnapped or murdered. Per the article, state polices on sample retention and access are wildly inconsistent. I really don't think a form that outlines a complex topic handed to people right after they've had a baby delivered is adequate notice that cops might treat it as evidence years or even decades later.
      - asdff 4y ago
        I think it does given the golden state killer story made global headlines. That being said it is still rare that this data are used, and the document covers that you can always destroy your samples.
- philipwhiuk 4y ago
  > These screenings are mandatory in the US. (Parents don’t have to provide consent, although they may opt out on religious grounds.)
- uoaei 4y ago
  They consented to that data being collected by the hospital, and shared with anyone who needs access to private health data for the purposes of medical examination or treatment. If they consented to the data being shared, they were probably not informed of the possibility it could be shared to law enforcement. Informed consent is the bar, if personal liberty ranks anywhere on your list of human rights.
  - asdff 4y ago
    They are informed it can be shared with law enforcement potentially though. If they weren't informed, you are right this would be a bigger case in the courts but its not because they are informed of these uses.
    - deleted 4y ago
      [deleted]
Beltalowda 4y ago
Babies cannot consent to anything, including blood screenings which, according to the article, "have been highly successful at reducing death and disability among children".
- uoaei 4y ago
  It is a cornerstone of modern civilization (with its construction of private property rights) that private data vis a vis health be, in the ideal, entirely divorced from demands made by governments or sanctioned actors thereof.
  - dekhn 4y ago
    I don't think this is correct in any modern legal theory of a major country.
    - uoaei 4y ago
      Per: https://www.cdc.gov/phlp/publications/topic/healthinformationprivacy.html https://www.cdc.gov/phlp/publications/topic/healthinformatio... DNA and other factors available in blood would seem to fall under "individually identifiable health information" by any definition: a blood sample confers the most unambiguous identification of a biological organism. Do blood samples nonetheless fall under "permitted disclosures"? Why? It goes completely against the stated purpose of laws like HIPAA re: PII to transmit DNA or other identification data.
      - dekhn 4y ago
        I'm not sure where your understanding of the law comes from. HIPAA applies to covered entities and business associates, not law enforcement agencies. But I was really commenting that private data is certainly somethign the government can obtain and use against you in court.

The baby did not consent to sharing its data.

by uoaei 4y ago

The baby did not consent to sharing its data.

asdff 4y ago

No, but its legal guardians probably did

giantg2 4y ago
They probably were not informed of the uses. The nurse probably told them they're using it to screen for defects. I guarantee they made no mention of the retention nor law enforcement uses.
- Beltalowda 4y ago
  If I buy a knife at the local shop then I don't explicitly consent to sharing purchase data with law enforcement either. But I don't think it's especially controversial that law enforcement nonetheless obtains this data with the appropriate warrant and such in the process of solving a crime.
  - imoverclocked 4y ago
    Perhaps but, "informed consent" within the medical industry is a lot different than at a knife shop.
  - jonas21 4y ago
    One of the issues in this case is that police did not have a warrant at the time they obtained the baby's DNA sample. They were unable to get one because they did not have probable cause that any individual had committed the crime. And certainly the baby could not have committed the crime, which occurred before it was born. It was only after the state lab gave them the baby's DNA sample that they were able to establish probable cause and get a warrant for the father.
- asdff 4y ago
  The nurse probably handed them a form written by the state that outlined all of this. California puts this in 4 easy to read pages which includes mention of law enforcement uses: https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20Library/NBS%20Documents/BiobankBloodSpotFactSheet.pdf https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20...
  - anigbrowl 4y ago
    And it emphasizes confidentiality and says it's hard and rare for law enforcement to get access to this information. People are going to imagine it only applies in cases like their child being kidnapped or murdered. Per the article, state polices on sample retention and access are wildly inconsistent. I really don't think a form that outlines a complex topic handed to people right after they've had a baby delivered is adequate notice that cops might treat it as evidence years or even decades later.
    - asdff 4y ago
      I think it does given the golden state killer story made global headlines. That being said it is still rare that this data are used, and the document covers that you can always destroy your samples.
philipwhiuk 4y ago
> These screenings are mandatory in the US. (Parents don’t have to provide consent, although they may opt out on religious grounds.)
uoaei 4y ago
They consented to that data being collected by the hospital, and shared with anyone who needs access to private health data for the purposes of medical examination or treatment. If they consented to the data being shared, they were probably not informed of the possibility it could be shared to law enforcement. Informed consent is the bar, if personal liberty ranks anywhere on your list of human rights.
- asdff 4y ago
  They are informed it can be shared with law enforcement potentially though. If they weren't informed, you are right this would be a bigger case in the courts but its not because they are informed of these uses.
  - deleted 4y ago
    [deleted]

Beltalowda 4y ago

Babies cannot consent to anything, including blood screenings which, according to the article, "have been highly successful at reducing death and disability among children".

uoaei 4y ago
It is a cornerstone of modern civilization (with its construction of private property rights) that private data vis a vis health be, in the ideal, entirely divorced from demands made by governments or sanctioned actors thereof.
- dekhn 4y ago
  I don't think this is correct in any modern legal theory of a major country.
  - uoaei 4y ago
    Per: https://www.cdc.gov/phlp/publications/topic/healthinformationprivacy.html https://www.cdc.gov/phlp/publications/topic/healthinformatio... DNA and other factors available in blood would seem to fall under "individually identifiable health information" by any definition: a blood sample confers the most unambiguous identification of a biological organism. Do blood samples nonetheless fall under "permitted disclosures"? Why? It goes completely against the stated purpose of laws like HIPAA re: PII to transmit DNA or other identification data.
    - dekhn 4y ago
      I'm not sure where your understanding of the law comes from. HIPAA applies to covered entities and business associates, not law enforcement agencies. But I was really commenting that private data is certainly somethign the government can obtain and use against you in court.