> Some states destroy the blood spots after a year, 12 states store them for at least 21 years. What are the other 12 states?
Presumably those that store the spots for between 1 and 21 years.
DNA of every baby born in California is stored. Who has access to it?
41–50 of 136 posts
Re: DNA of every baby born in California is stored. Who has access to it?
#42"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...
Re: DNA of every baby born in California is stored. Who has access to it?
#43"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...
Thanks I appreciate the information.
Re: DNA of every baby born in California is stored. Who has access to it?
#44Earlier quoted context omitted.
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 ?
Well, obviously they realize that, smarty pants. Because the existing GPDR already covers that in Europe...it’s like they’re saying the US needs one.
Re: DNA of every baby born in California is stored. Who has access to it?
#45> Who has access to it? My flippant answer, before reading the article: Basically everyone, probably through a web site where the requestor simply uploads a document (any document) then checks an electronic checkmark next to the words "I pinky swear that I will only use this for good and pure and light-giving purposes." > Who has access to it? After reading the article: Yep, law enforcement and "third party researche…
You can safely assume that google, facebook and data brokers have it.
The article discusses a Biobank which stores physical spots of blood. They are not as far as I can tell suggesting every baby is sequenced.
While rapidly getting cheaper (probably between 1 and 3 thousand USD all inc) this would still be an expensive exercise.
Re: DNA of every baby born in California is stored. Who has access to it?
#46Earlier 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 it fundamentally misses the point.
Nobody objects to testing newborns for diseases. That’s awesome. Keep doing it. We all support that program, so there’s not much point in telling us how good it is.
Almost entirely unrelated to that is the storage of samples after they’re taken. That’s the actual problem, and solving it has not effect on the first issue there.
Re: DNA of every baby born in California is stored. Who has access to it?
#47> Who has access to it? My flippant answer, before reading the article: Basically everyone, probably through a web site where the requestor simply uploads a document (any document) then checks an electronic checkmark next to the words "I pinky swear that I will only use this for good and pure and light-giving purposes." > Who has access to it? After reading the article: Yep, law enforcement and "third party researche…
You can safely assume that google, facebook and data brokers have it.
You can never "safely assume" a wild accusation with absolutely zero proof.
Re: DNA of every baby born in California is stored. Who has access to it?
#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. Moreover, since he’s literally the person selling the dna, it strains my credulity to believe that he hasn’t already known this, and if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically.
“”” "De-identified DNA" However, Lorey stressed that the blood spots cards, stored in the state biobank, are "de-identified." There is no name or medical information on the card, just the blood spots and a number. “””
Is he trying to sell me on the idea that my dna can’t be used to personally identify me?
That was a pathetic defense.
Re: DNA of every baby born in California is stored. Who has access to it?
#49Re: DNA of every baby born in California is stored. Who has access to it?
#50Earlier quoted context omitted.
You can safely assume that google, facebook and data brokers have it.
The article discusses a Biobank which stores physical spots of blood. They are not as far as I can tell suggesting every baby is sequenced. While rapidly getting cheaper (probably between 1 and 3 thousand USD all inc) this would still be an expensive exercise.
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.