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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?

#61

Post by dlg »

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?

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

#62

Post by andreasley »

basicplus2 wrote: post #27

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 State…

And in Switzerland [1] (text in german). Blood samples from newborn screenings are stored for 30 years. For the screening to take place, the parents' oral consent is required. Opting out of the screening or blood archival is VERY rare. Though personal information is destroyed after analysis, attribution is still possible using LIMS (an electronic laboratory database).

As far as I understand, access to this data is generally restricted [2].

"If illnesses occur later, which can be clarified via tests on this sam­ple, the responsible physician can request it from [Children's Hospital Zurich]. Part of the remaining material may also be used by the screening labora­tory during quality control measures and for the development of new research methods. In this case, the samples will be anonymous, having undergone a procedure to make them unidentifiable." [3]

[1] https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name... [2] https://www.admin.ch/opc/en/classified-compilation/20011087/... [3] http://www.neoscreening.ch/display.cfm/id/100489/disp_type/d...

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

#63

Post by NHern031 »

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?

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 not to stop this, to atleast shed light on the situation.

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

#65

Post by stinkbug »

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…

>if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically.

It said the studies have to be approved by a review board and that the researchers have to agree to destroy or return the samples when they're done.

I don't think we should cynically assume "he knows the answer is yes." He may be hedging simply because he knows it relies on the word of the researchers.

But biomedical researchers have been sensitized to issues of research ethics much longer than internet/data science practitioners. There can be significant penalties for procedural violations and in my experience people do not tend to play fast and loose with the rules.

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

#66

Post by jasonlotito »

greglindahl wrote: post #23
djsumdog wrote: post #18

Earlier quoted context omitted.

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.

While I hate getting meta and discussing voting in HN comments, the best thing to do in the future is instead of asking why votes are going in one direction or another, instead, either vote yourself, or if it calls for it, offer up on-topic commentary. Comments that stir good on-topic discussion should never be down voted, regardless of whether you disagree with them or not, or even if they are missing a point.

Down voting a comment like the parents is, at best, insulting the very premise of good HN discussions.

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

#67

Post by thankthunk »

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…

> 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.

That is so disgusting. For all the talk about individuality and liberalism, it's amazing how liberal societies are so authoritarian and controlling.

If you don't own your DNA, then what do you own? But I guess big brother knows what's best for us.

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

#68

Post by thankthunk »

greglindahl wrote: post #23
djsumdog wrote: post #18

Earlier quoted context omitted.

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.

Because the guy was justifying taking and keeping the DNA material for perpetuity with his anecdote.

It's the quintessential example of authoritarianism defense. One instance of good justifies authoritarianism and violation of individual liberties and freedom.

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

#69

Post by bsenftner »

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.
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