3 ms·

They already collect blood samples in the states to test for incredibly rare congenital defects. When we tried to decline testing, we were threatened with a CPS

They already collect blood samples in the states to test for incredibly rare congenital defects. When we tried to decline testing, we were threatened with a CPS case and the removal of our just-born child. I imagine leaving the hospital at that point would have gone very poorly for us from a legal point of view. Supposedly the samples are destroyed "eventually," but we got several conflicting answers as to when that was. No one had any expertise in anything even privacy-adjacent, so what we were giving "consent" to was never clarified. From our experience, I think a law that maintained DNA samples for all births in the US would easily sail through despite a very small and impotent opposition. I hope I am wrong.

emodendroket 3y ago
This is one thing I think California does pretty well on. I remember the paperwork on that being fairly clear.
- hypothesis 3y ago
  Was it clear that DNA samples are stored indefinitely and paid access is allowed to outsiders? There is an article that is a few years old, but is very eye opening. [0] https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/ https://www.cbsnews.com/news/california-biobank-dna-babies-w...
  - emodendroket 3y ago
    I read that pamphlet but I have to admit that it did not give me an impression that law enforcement could use the data.
    - hypothesis 3y ago
      According to recent follow up article, you’re not alone in getting such impression: “A 2018 statewide CBS News poll found that three-quarters of new parents who were surveyed had no idea the state would store the leftover blood spots indefinitely for research or that they would be accessible to law enforcement.” It is also interesting that they are no longer tracking said access anymore, so there is no way to confirm or deny their claims of “rare” instances. [0] https://www.cbsnews.com/amp/sacramento/news/right-to-know-california-storing-your-childs-dna/ https://www.cbsnews.com/amp/sacramento/news/right-to-know-ca...
testacct22 3y ago
> When we tried to decline testing, we were threatened with a CPS case and the removal of our just-born child. Pretty sure that test is voluntary in a bunch of states?
- ultrarunner 3y ago
  That was my understanding, and the provider confirmed that, but we were told that it may count as neglect and that as a mandatory reporter she would be required to "submit a complaint." Phone calls were made, and she reiterated that a case would be opened and they may need to remove the child until the completion of that process. So yes, voluntary.

emodendroket 3y ago

This is one thing I think California does pretty well on. I remember the paperwork on that being fairly clear.

hypothesis 3y ago
Was it clear that DNA samples are stored indefinitely and paid access is allowed to outsiders? There is an article that is a few years old, but is very eye opening. [0] https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access/ https://www.cbsnews.com/news/california-biobank-dna-babies-w...
- emodendroket 3y ago
  I read that pamphlet but I have to admit that it did not give me an impression that law enforcement could use the data.
  - hypothesis 3y ago
    According to recent follow up article, you’re not alone in getting such impression: “A 2018 statewide CBS News poll found that three-quarters of new parents who were surveyed had no idea the state would store the leftover blood spots indefinitely for research or that they would be accessible to law enforcement.” It is also interesting that they are no longer tracking said access anymore, so there is no way to confirm or deny their claims of “rare” instances. [0] https://www.cbsnews.com/amp/sacramento/news/right-to-know-california-storing-your-childs-dna/ https://www.cbsnews.com/amp/sacramento/news/right-to-know-ca...

testacct22 3y ago

> When we tried to decline testing, we were threatened with a CPS case and the removal of our just-born child. Pretty sure that test is voluntary in a bunch of states?

ultrarunner 3y ago
That was my understanding, and the provider confirmed that, but we were told that it may count as neglect and that as a mandatory reporter she would be required to "submit a complaint." Phone calls were made, and she reiterated that a case would be opened and they may need to remove the child until the completion of that process. So yes, voluntary.