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DNA of every baby born in California is stored. Who has access to it?

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Re: DNA of every baby born in California is stored. Who has access to it?

#51

Post by xevb3k »

akvadrako wrote: post #50
xevb3k wrote: post #45

Earlier quoted context omitted.

The article discusses a Biobank which stores physical spots of blood. They are not as far as I can tell suggesting every baby is sequenced. While rapidly getting cheaper (probably between 1 and 3 thousand USD all inc) this would still be an expensive exercise.

You don't need a complete sequence to get most of the currently useful data, and those sequences will probably be done in due time.

The article doesn’t mention and routine sequencing at all. I think it’s unlikely that someone has paid to sequence, even the exosomes of these individuals... who knows though!

Re: DNA of every baby born in California is stored. Who has access to it?

#52

Post by hardwaresofton »

mentalhealth wrote: post #40
bigbugbag wrote: post #36

Earlier quoted context omitted.

Why would it be normal ?

The way many metabolic conditions work is that essential products are not synthesized, or toxic products are not cleared. These can cause unrecoverable damage within hours or days of birth if not treated. So, tests are performed to identify known metabolic conditions to prevent newborns from suffering unrecoverable brain/otherwise damage. This is generally known as "newborn screening" if you are curious to learn more…

Not OP but maybe the question is more "why is the state doing this and keeping the samples" not "why is it useful"...

Re: DNA of every baby born in California is stored. Who has access to it?

#53

Post by jedberg »

I had a kid a year ago, and another one three years ago. Both had this test.

Their mom probably wouldn't remember if you asked her. She's not really a good person to ask. You should be asking the partner who was there for the birth, since we're the one that actually sees it happen (they were still stitching up my wife when the test was done).

For the second kid (because I was just in a daze for the first kid), being the paranoid security person that I am, I asked what happens to the sample and what kind of controls are placed on the sample. I also asked if I could opt out. I was told that I could not opt out and that the sample becomes the property of the State and there is nothing I could do about it.

This article was the first I learned that I could request it be destroyed. It is also the first time I'm learning it could be used for research (but I kind of assumed that was why they kept it in the first place, other than to add to a database for matching with potential criminal activity).

So thanks for posting this, now I have to figure out how to request the samples. I'm going to see if I can actually the spots back.

Re: DNA of every baby born in California is stored. Who has access to it?

#54

Post by exabrial »

bdowling wrote: post #8
exabrial wrote: post #2

How on earth is this legal in the USA?

The default in the U.S. is that actions are legal unless they're made illegal by some law. There's no law against this, therefore it's legal.

I would think this violates at minimum the 4th Amendment

Re: DNA of every baby born in California is stored. Who has access to it?

#55

Post by manigandham »

bigbugbag wrote: post #36
roel_v wrote: post #32

Earlier quoted context omitted.

What? That newborns are checked for congenital diseases? How is that anything but normal?

Why would it be normal ?

You go to the doctor to get a physical checkup to see if anything's wrong, then get it treated.

This is exactly the same thing, but done for newborns who are much more fragile and vulnerable to make sure they get care while already in the hospital, especially for any potentially severe or immediate issues.

Re: DNA of every baby born in California is stored. Who has access to it?

#56

Post by DanBC »

cududa wrote: post #39
bigbugbag wrote: post #36

Earlier quoted context omitted.

Why would it be normal ?

If you have technology to save a child’s life using simple modern medicine why would you not?

Doing the tests is one thing. Keeping the samples, and telling parents that the samples can't be destroyed, is something else.

Also, do we know if this actually results in lower mortality?

Re: DNA of every baby born in California is stored. Who has access to it?

#57

Post by DanBC »

blattimwind wrote: post #25
cft wrote: post #22

Earlier quoted context omitted.

At least one could argue that a person has a choice: to commit or not to commit a crime. But a newborn does not have a choice to have its DNA collected. This is the worst violation of privacy I have ever read about in my life. And I find not that surprising that CA is one of the few states where this is practiced.

> This is the worst violation of privacy I have ever read about in my life. I dimly remember some private schools using school laptops to take naked photos of their underage students.

https://en.wikipedia.org/wiki/Robbins_v._Lower_Merion_School...

It was pretty bad. Especially because an intern raised concerns beforehand, and those concerns were dismissed as alarmist.

Re: DNA of every baby born in California is stored. Who has access to it?

#58

Post by Broken_Hippo »

cft wrote: post #22
djsumdog wrote: post #17

Earlier quoted context omitted.

The UK collects DNA on anyone who has been convicted of a crime: https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Da...

At least one could argue that a person has a choice: to commit or not to commit a crime. But a newborn does not have a choice to have its DNA collected. This is the worst violation of privacy I have ever read about in my life. And I find not that surprising that CA is one of the few states where this is practiced.

Only they take it when you were arrested, not when you are convicted. Anyone can get arrested - it doesn't take you committing a crime for this to happen.

Innocent people get arrested. Sometimes, folks are accidentally guilty. Bag of drugs in your back seat, dropped by that workmate you drove to lunch? It is your problem now. Not to mention the way the system is run in the US, innocent people wind up convicted. Some folks convict themselves voluntarily because getting arrested and waiting in jail for a trial can do some major life damage.

Re: DNA of every baby born in California is stored. Who has access to it?

#59

Post by throwahey »

DanBC wrote: post #56
cududa wrote: post #39

Earlier quoted context omitted.

If you have technology to save a child’s life using simple modern medicine why would you not?

Doing the tests is one thing. Keeping the samples, and telling parents that the samples can't be destroyed, is something else. Also, do we know if this actually results in lower mortality?

I would lean towards no. I've seen state research based on flimsier data. In this case, infant mortality which has been going down historically could be connected to anything. Perhaps carbon levels in the atmosphere were the cause.

Re: DNA of every baby born in California is stored. Who has access to it?

#60

Post by shanghaiaway »

sonotathrowaway wrote: post #48

“”” "So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's knowledge to be used for other purposes?" she asked. "I want to say no" he said. "But I'm not ready to say no because I know how humans can be sometimes." “”” To me that just reads like he knows the answer is yes and is just trying to soft-pedal the truth. Moreov…

Obviously the number references your name in another register. Otherwise you wouldn't be able to request to have the sample returned. Got to love American state propaganda.
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