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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?

#21

Post by ocdtrekkie »

trollian wrote: post #10

This is how we found out that my daughter has cystic fibrosis and have been able to treat her from a few weeks after birth. The result is that she'll probably live a normal length life rather than dying in adolescence. So I'm fairly positive on this program...

This is good to know, and it's great that they're running these tests. The issue is not that they run these tests, but that the data is then retained for use by others, not for protecting your child.

There is a middle ground between "we don't test for diseases" and "your kid's DNA is now public knowledge".

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

#22

Post by cft »

djsumdog wrote: post #17
exabrial wrote: post #2

How on earth is this legal in the USA?

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.

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

#23

Post by greglindahl »

djsumdog wrote: post #18
greglindahl wrote: post #16

Earlier quoted context omitted.

Why are people downvoting this comment? Even if you think the current system is wrong, you should be thinking of how to fix it without losing the benefit outlined by this commenter.

Because you can determine this information and then not store the DNA.

That's why people are downvoting this guy?

I totally agree that there's a more privacy-respecting solution. I was asking why people were downvoting this comment.

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

#24

Post by tehgdogg »

"Any tissue sample that is given in a hospital or any medical facility, once it's given, is no longer your property," Lorey explained. "You can agree with that or disagree with that, but it happens to be the law."

If true this is incredibly depressing. I don't know very much about patient privacy laws but have some follow up questions for those more knowledgeable:

1) I assume this quote refers to California state law and not Federal law?

2) Is there a state that has a track record of taking privacy more seriously?

Despite caring deeply about my privacy I've let it steadily erode with the rise of "customers are the product" type services. Between this and Cambridge Analytica it seems that the US is surprisingly bad at protecting citizens' privacy. I'd like to know if it's possible to live in the US without essentially waiving my right to keep personal information personal.

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

#25

Post by blattimwind »

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.

> 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.

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

#26

Post by cft »

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.

But that was probably criminal and not mandated at the state level! It makes me very very scared of the benevolence and of the thought process of CA government.

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

#27

Post by basicplus2 »

It seems we have a similar issue in Australia...

https://www.mja.com.au/journal/2011/194/6/newborn-screening-...

and this

"19.16 In 1999, the Senate Legal and Constitutional Legislation Committee referred to newborn screening card collections as ‘inadvertent DNA sample banks’, noting that identified blood samples containing genetic material from almost all people under the age of 28 are currently stored in most States and Territories."

https://www.alrc.gov.au/publications/19-human-tissue-collect...

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

#28

Post by bigbugbag »

dannyw wrote: post #9
bdowling wrote: post #8

Earlier quoted context omitted.

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.

We need a GPDR for biometrics.

How a European law would help with a situation in California ? You do realize that GPDR does not apply in the US, right ?

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

#29

Post by bigbugbag »

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.

Actually pretty much everybody has committed a crime, sometimes unwittingly but still.

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

#30

Post by Spare_account »

djsumdog wrote: post #17
exabrial wrote: post #2

How on earth is this legal in the USA?

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

They collect DNA of anyone arrested by the police. Then they aim to destroy samples taken from people not subsequently convicted.

As I understand it the process is quite opaque and there have been cases where some police forces have revealed that they are unable to (or simply refuse to) comply with the requirement to delete samples so they keep everything.

https://www.telegraph.co.uk/news/uknews/law-and-order/786353...

>Research found South Yorkshire was most likely to remove a DNA profile while Cambridgeshire, Gloucestershire and Nottingham refused to remove any profiles.

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