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.
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?
#92Earlier quoted context omitted.
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> corporate, neoliberal, infantile fascism Not so infantile anymore. > "pussification" ... "SJW" Please keep this words limited to 4chan.
Those are good words that work to talk about certain specific concepts. Do you have any word better than pussification?
What about SJW? Do you like the word "baizuo" better?
Re: DNA of every baby born in California is stored. Who has access to it?
#93Home births are popular in California (well, relatively speaking anyway); has anyone had a baby at home & did the state come asking for DNA when you went to get a birth certificate or some other time?
My wife and I had children at our home in California in both 2013 and 2014.
No, California did not seek any kind of test or diagnostic results (or anything like this). It was never mentioned and this is the first I have ever heard of it.
Re: DNA of every baby born in California is stored. Who has access to it?
#94The 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 Newbor…
> 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.
Shouldn't this be the default?
Re: DNA of every baby born in California is stored. Who has access to it?
#95My wife gave birth last year in California, and immediately upon returning home, we located the paperwork for requesting the DNA be destroyed and submitted it. We received a response telling us that our request was received, but that's all. Unfortunately neither of us can remember where to find the form we needed to send it to request it be destroyed. Maybe it was in the hospital paperwork?
Re: DNA of every baby born in California is stored. Who has access to it?
#96> If you or your child was born in California after 1983, your DNA is likely being stored by the government
How ironic that this began right after 1983.
Re: DNA of every baby born in California is stored. Who has access to it?
#97I 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 throw out it's possible it's not.
Re: DNA of every baby born in California is stored. Who has access to it?
#98Earlier 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...
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.…
So they make their own laws or break existing law? Either is unacceptable. How is one 'unable' to destroy a tissue sample?
Re: DNA of every baby born in California is stored. Who has access to it?
#99“”” "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. Bu…
> that the researchers have to agree to destroy or return the samples when they're done.
So just like Cambridge Analytica, and I assume he’s going to appear on tv with that same stupid look on his face when he feigns surprise that he ‘suggestions’ get ignored?
>He may be hedging simply because he knows it relies on the word of the researchers.
Yea that’s exactly my point. He is literally the person selling this information, and who is in charge. He structured the terms of sale for his benefit. I hold him responsible for the consequences of his actions, irregardless of whether or not he tries to use ignorance or negligence as his defense.
Honestly, I am basing my opinion of him on his attempt to convince me that my DNA isn’t personally identifiable. That really summed up his intellectual integrity for me.
Re: DNA of every baby born in California is stored. Who has access to it?
#100"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…
A patient’s lack of ownership over their discarded tissue is (at least partially) a result of the decision in Moore v. Regents of the University of California [1] which was, yes, a California Supreme Court case. Though it seems courts in other jurisdictions sometimes agree with its decision. [1] https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...
Wow, reading through that case it seemed like it should have been a slam dunk for Moore. It appears that we literally have more rights over our personal information than we do over our DNA.