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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?

#71

Post by lmkg »

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…

This is why property isn't a great metaphor for certain situations[1]. An important aspect that people (incorrectly) attribute to property is exclusivity: When I own something, it's mine, and that means it's not anyone else's. A transfer of ownership is a severing of rights.

The fact is, for some things (like tissue samples with DNA), it's important to recognize that non-owners can have a stake in is done with something. The originator of a tissue sample cannot entirely severe their connection with that tissue, and that means that the new owner shouldn't be able to claim unrestricted ownership. The legality should recognize ways in which the non-owner can be affected by the owner's interactions with the sample.

(Aside: GDPR works by essentially doing the same thing with data. The "Rights of the Data Subject" stipulate that a non-owner of the data is still a stakeholder in that data.)

[1] Although, ironically, that actually makes property law well-suited to addressing the situation. In Common Law, the idea of 'ownership' is understood as 'a bundle of rights,' which can be un-bundled. A framework for addressing the situation is to enumerate separable rights for tissue samples, and stipulate different rules for delegating those rights.

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

#72

Post by gcb0 »

NHern031 wrote: post #63
dlg wrote: post #61

Earlier quoted context omitted.

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 no…

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

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

#74

Post by apo »

The article states that parents can request the blood spot sample to be destroyed. A link is given.

You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency's website states it "may not be able to comply with your request."

Following the link, I saw no evidence that parents can request destruction of the sample. Instead, this is what I saw:

You have a right to ask the Newborn Screening Program not to use or share your or your newborn’s information and/or specimen in the ways listed in this notice. However, we may not be able to comply with your request.

https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.a...

I also haven't been able to find information on the process a parent can follow to get the sample destroyed.

Not using a sample is not the same thing as destroying it. What am I missing?

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

#75

Post by burntrelish1273 »

thankthunk wrote: post #67
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.

[flagged]

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

#76

Post by eeZah7Ux »

NHern031 wrote: post #63
dlg wrote: post #61

Earlier quoted context omitted.

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 no…

> Not being able to opt your child out [...] slippery slope to a Brave New World.

Having to opt out instead of in is already bad enough.

Not being able to opt out is way beyond "slippery slope".

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

#77

Post by eeZah7Ux »

burntrelish1273 wrote: post #75
thankthunk wrote: post #67

Earlier quoted context omitted.

> 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.

[flagged]

> corporate, neoliberal, infantile fascism

Not so infantile anymore.

> "pussification" ... "SJW"

Please keep this words limited to 4chan.

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

#80

Post by zo1 »

thankthunk wrote: post #67
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.

Well, when you don't own the majority of the fruits of your own labor, then I'd say your "DNA" is a drop in the bucket in comparison. But yeah, precisely how you feel is how Libertarians and other actual free-minded individuals feel about concepts such as taxation.

Personally, I don't see DNA as that intrinsic or important as others do. It's just a piece of information about the composition of my body. Sure, if they could completely clone my brain and the essence of what I am, then I could get behind something like this. But as is, I'd just be peeved that someone gets to "use" my DNA. Same way I get peeved that Google/Facebook "use" my browsing habits to train their ML algorithms.

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