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

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

#101

Post by avn2109 » Sun, May 13, 2018, 6:13 PM UTC

ApolloFortyNine wrote: post #97

mijowi wrote: post #87

I can comment on this firsthand. I was born in a hospital here in California, so my DNA was collected. A couple years ago I heard about this program, which I believe to be a gross violation of privacy and overstepping of authority. I read somewhere that you can have your/your child's sample destroyed by filling out a form and sending it to a state health agency (don't remember the specific one now). You have to provi…

I think it's an extreme overstep as well, but I do believe it's possible the data is anonymous. A secure hash of the fields you were talking about would make it possible to lookup when given the correct information, but impossible to reverse. Of course, it's just as likely, this already being a government program and a massive overreach at that, that your identifying data is stored in plain text. I just wanted to thr…

Realistically, the odds are vanishingly small that various security-themed agencies aren't already ingesting all the DNA data. This is a treasure trove in the eyes of a police state.

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

#102

Post by srj » Sun, May 13, 2018, 6:17 PM UTC

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...

My son was also tested for Cystic Fibrosis but in MA, to my knowledge his DNA isn't stored. I think CF is standard screening in all states, this website has a state-by-state list: http://www.babysfirsttest.org/newborn-screening/states

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

#103

Post by lostlogin » Sun, May 13, 2018, 6:22 PM UTC

avn2109 wrote: post #101

ApolloFortyNine wrote: post #97

Earlier quoted context omitted.

I think it's an extreme overstep as well, but I do believe it's possible the data is anonymous. A secure hash of the fields you were talking about would make it possible to lookup when given the correct information, but impossible to reverse. Of course, it's just as likely, this already being a government program and a massive overreach at that, that your identifying data is stored in plain text. I just wanted to thr…

Realistically, the odds are vanishingly small that various security-themed agencies aren't already ingesting all the DNA data. This is a treasure trove in the eyes of a police state.

After the Golden State Killer episode, it’s now probably seen as cheaper for them to just contact companies like 23andme.

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

#104

Post by jjeaff » Sun, May 13, 2018, 6:30 PM UTC

bsenftner wrote: post #69

tehgdogg wrote: post #24

"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…

The USA only protects one type of citizen: the corporate citizen. Human citizens are like a 3rd world country here. Those human citizens who want better treatment own or control corporations, and gain their entitlement through them. This is the United States of America.

What rights does a "corporate citizen" have that an actual citizen doesn't?

I think what you really mean is that people or organizations with money seem to have more rights. Obviously because they have the resources to fight for those rights.

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

#105

Post by C14L » Sun, May 13, 2018, 6:31 PM UTC

mijowi wrote: post #87

I can comment on this firsthand. I was born in a hospital here in California, so my DNA was collected. A couple years ago I heard about this program, which I believe to be a gross violation of privacy and overstepping of authority. I read somewhere that you can have your/your child's sample destroyed by filling out a form and sending it to a state health agency (don't remember the specific one now). You have to provi…

So, when they claimed to having destroyed your sample, did they also destroy all the data derived from it and stored electronically, if any?

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

#106

Post by chillydawg » Sun, May 13, 2018, 6:31 PM UTC

whataretensors wrote: post #91

What's up with the hoarding and secrecy of medical data? It's real possibility that AI starts to work and solves all diseases in the next few decades. Maybe that's the point? To horde life-extension and immortality inventions.

Because it's perfect for discriminating against you. First it's health insurance company putting your prices up due to poor genes, then it's an employer getting rid of you because they see genes for depression and addiction.

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

#107

Post by jjeaff » Sun, May 13, 2018, 6:34 PM UTC

shanghaiaway wrote: post #60

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.

Doesn't sound like propaganda to me. Seems clear. When samples for out to researchers, they only get the sample and no way to look up who it belongs to.

However, officials who have access to the registry could obviously look you up. Hopefully there are controls in place to keep those same officials from having samples tested, but 8 doubt it.

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

#108

Post by jjeaff » Sun, May 13, 2018, 6:53 PM UTC

xevb3k wrote: post #51

akvadrako wrote: post #50

Earlier quoted context omitted.

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!

The article does mention sequencing. It clearly says:

"And to be clear, he stressed, there is also no genome database. The state does not sequence or extract the DNA from the blood spots collected"

And the previous paragraph explains that researchers do not have access to the name registry.

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

#109

Post by jjeaff » Sun, May 13, 2018, 6:56 PM UTC

gcb0 wrote: post #72

NHern031 wrote: post #63

Earlier quoted context omitted.

Not being able to opt your child out of DNA collections seems like what could be a slippery slope to a Brave New World. What's even worse is the level of misinformation surrounding the situation. Even if the samples are held under the assumption that they will be used for research, one should be entitled to opt-in, opt-out, and know what is happening with their/their child's DNA. A lawsuit here seems reasonable if no…

opting out of proven good health measures sound like anti-vaxer, but ensuring the state have apropriate privacy safeguards is paramont

There's nothing antivax about requiring opt in before the state can store your samples indefinitely.

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

#110

Post by jjeaff » Sun, May 13, 2018, 6:57 PM UTC

dlg wrote: post #61

jedberg wrote: post #53

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…

Would anyone here be interested in a lawsuit and/or campaign to get this changed?

Looks to me like a good angle would be the state's apparent failure to notify parents that their child's dna will be stored. Since that is a provision of the law.