4 ms·

Dangerous precedence, this will increase the portion of the population that chooses to skip the screening.

by Clent 4y ago

imoverclocked 4y ago
As it should. So far, data collection rarely benefits the people the data are collected from. DNA is akin to collecting contact lists of others to create a shadow profile of unknown persons from known ones. No opt-out is possible.
- cm2187 4y ago
  I don't get why they need to store it to screen it.
- tablespoon 4y ago
  >> Dangerous precedence, this will increase the portion of the population that chooses to skip the screening. > As it should. Not in this case. These screenings detect serious diseases, and skipping them will have serious health consequences for many people: https://www.chop.edu/conditions-diseases/newborn-screening-tests https://www.chop.edu/conditions-diseases/newborn-screening-t...: here's just one of the things they test for: > Phenylketonuria (PKU). PKU is an inherited disease in which the body cannot metabolize a protein called phenylalanine. It is estimated that one in every 10,000 to 15,000 babies is born with PKU in the U.S. Without treatment, PKU can cause intellectual disability. Newborn screening for PKU is required in all 50 states. IIRC, babies with that condition need to be put on a special formula ASAP, or they'll have problems. > So far, data collection rarely benefits the people the data are collected from. That may be true, but it's lazy and incorrect to assume that it's correct to proceed like it never benefits anyone.
  - djbebs 4y ago
    Too bad the hospitals aren't trustworthy.
    - tablespoon 4y ago
      > Too bad the hospitals aren't trustworthy. What the heck is that supposed to mean?
      - imoverclocked 4y ago
        From experience with immediate family in the US, hospitals can be quite scary currently. Reasons range from staff that doesn’t communicate to surgeries that are counter-indicated and scheduled without patient knowledge. Then there is the whole opaque billing process where you learn that the minor medication (like Advil) costs hundreds of dollars after the fact. Personally, a hospital is the last place I want to end up right now.
        tablespoon 4y ago
        Going from that to "hospitals aren't trustworthy" in the context of newborn screening tests is a massive overreaction.
        imoverclocked 4y ago
        Ok, let's try again. Hospitals are businesses optimizing for their bottom line, not for patient benefit. Law-enforcement has a lot of funding. Sharing data (obtained from humans without a fully developed consciousness) with law enforcement (for whatever purposes they want) is a massive overreach and has nothing to do with providing care for the patient. So, their best interest is not your best interest, but we should trust them implicitly?
mywittyname 4y ago
Unfortunately, it doesn't matter. Most of my family has submitted samples to those ancestry sites, including my parents. So I'm basically in there whether I want to or not.

Dangerous precedence, this will increase the portion of the population that chooses to skip the screening.

by Clent 4y ago

Dangerous precedence, this will increase the portion of the population that chooses to skip the screening.

As it should. So far, data collection rarely benefits the people the data are collected from. DNA is akin to collecting contact lists of others to create a shadow profile of unknown persons from known ones. No opt-out is possible.

cm2187 4y ago
I don't get why they need to store it to screen it.
tablespoon 4y ago
>> Dangerous precedence, this will increase the portion of the population that chooses to skip the screening. > As it should. Not in this case. These screenings detect serious diseases, and skipping them will have serious health consequences for many people: https://www.chop.edu/conditions-diseases/newborn-screening-tests https://www.chop.edu/conditions-diseases/newborn-screening-t...: here's just one of the things they test for: > Phenylketonuria (PKU). PKU is an inherited disease in which the body cannot metabolize a protein called phenylalanine. It is estimated that one in every 10,000 to 15,000 babies is born with PKU in the U.S. Without treatment, PKU can cause intellectual disability. Newborn screening for PKU is required in all 50 states. IIRC, babies with that condition need to be put on a special formula ASAP, or they'll have problems. > So far, data collection rarely benefits the people the data are collected from. That may be true, but it's lazy and incorrect to assume that it's correct to proceed like it never benefits anyone.
- djbebs 4y ago
  Too bad the hospitals aren't trustworthy.
  - tablespoon 4y ago
    > Too bad the hospitals aren't trustworthy. What the heck is that supposed to mean?
    - imoverclocked 4y ago
      From experience with immediate family in the US, hospitals can be quite scary currently. Reasons range from staff that doesn’t communicate to surgeries that are counter-indicated and scheduled without patient knowledge. Then there is the whole opaque billing process where you learn that the minor medication (like Advil) costs hundreds of dollars after the fact. Personally, a hospital is the last place I want to end up right now.
      - tablespoon 4y ago
        Going from that to "hospitals aren't trustworthy" in the context of newborn screening tests is a massive overreaction.
        imoverclocked 4y ago
        Ok, let's try again. Hospitals are businesses optimizing for their bottom line, not for patient benefit. Law-enforcement has a lot of funding. Sharing data (obtained from humans without a fully developed consciousness) with law enforcement (for whatever purposes they want) is a massive overreach and has nothing to do with providing care for the patient. So, their best interest is not your best interest, but we should trust them implicitly?

mywittyname 4y ago

Unfortunately, it doesn't matter. Most of my family has submitted samples to those ancestry sites, including my parents. So I'm basically in there whether I want to or not.