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DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties (cbslocal.com)
schwit1 writes: "This might come as a surprise to California natives in their 20s and early 30s: The state owns your DNA. Every year about four million newborns in the U.S. get a heel prick at birth, to screen for congenital disorders, that if found early enough, can save their life." However, when those tests are done, the leftover blood isn't simply thrown away. Instead, they're taken to an office building and the DNA data is stored in a database. "It’s a treasure trove of information about you, from the color of your eyes and hair to your pre-disposition to diseases like Alzheimer’s and cancer." And that's not the end of it: "The California Department of Public Health (CDPH) is not the only agency using the blood spots. Law enforcement can request them. Private companies can buy them to do research – without your consent."
Standard herd-management practice; stop disrespecting your owners.
We wont use it for anything else they said.
The government is just looking out for you they said.
The people who do this shit should be lined up and shot.
Not if we set an example and kill everyone involved in making this decision, and their direct families.
Law enforcement can request them. Private companies can buy them to do research - without your consent.
neccesarily means that
The state owns your DNA.
Surely it should be possible to establish that individuals own their DNA, particularly from the perspective of private companies that may want to buy them from the state. Lawsuit time?
These people are like modern day vampires, they want to suck you dry.
Don't waste your vote! Vote for whoever you want, unless you live in a swing state it won't matter anyways
No doubt they can patent anything interesting that they find in your blood.
You won't be the first whose DNA made millions for other people.
...omphaloskepsis often...
Surely doctors have a duty of care to their patients that would include preventing this happening? Seems to me that a rather large class action suit might be out there soon...
DNA is Data.
The EU/US Data Treaty and the US/Canada Data Treaty both give citizens of those countries, even if born in the US, data privacy.
I smell class action lawsuits.
-- Tigger warning: This post may contain tiggers! --
I got out of Kali longer before the kids came.
If they are doing this, there has to be a legal release form buried somewhere in the paperwork that people sign on admittance. There is no way a good medical lawyer would let this occur in a hospital that they were paid to represent, because of the possibility that people find out ten years later and crater the hospital with a class action lawsuit.
Of course, any pregnant woman admitted under emergency circumstances might not have had a chance to sign the papers before it is done..it seems that if this is true, someone is going to get sued for a lot of money over this.
HA! I just wasted some of your bandwidth with a frivolous sig!
they still can't patent discoveries. Now, synthetic DNA yes, you can patent that. But then you didn't discover that, you made it. Although the problem with that is at what point did you 'discover' it or just make something naturally occurring...
Hi! I make Firefox Plug-ins. Check 'em out @ https://addons.mozilla.org/en-US/firefox/addon/youtube-mp3-podcaster/
If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is, I don't think it's a problem. It's useful for compiling statistics and doing studies. However, if law enforcement is interested in this data, it sounds like they are actually keeping track of who the DNA sample came from. Just make it anonymous.
Since when has Slashdot posted articles without links to corroborate the story? This is a new low even for Slashdot.
{Citation needed}
It is really strange to be sitting around as a typical gov't employee reading ./ and finding my very own job mentioned.
So yeah, we have all your blood, if you were born sometime around or after the mid eighties. We get roughly 500,000 samples a year, and the blood was until recently stored alongside Safeway's inventory at a local freezer facility.
We also have to special order baby blood for our reference samples, we have the best catalogs.
Now if you have any questions about this place, ask me, if I don't know, I can ask someone else. I am quitting for my Ph'D at the end of the year so you've got my time ./ as a thanks for giving me so much to read over the last six years.
Surely there must be an interpretation of the DMCA whereby the originator of IP can prevent its misuse? Or does that apply only to corporations?
Finally - an advantage to being an old guy. All you young kids can worry about your DNA privacy AND get off my lawn!
In all seriousness, privacy is being eroded from so many directions, if we (and by we I mean almost everyone) don't start fighting against it, we will discover that the War on Privacy is over, and we have lost. In fact, between Facebook, Google, ISPs and electronic health records, it's probably over already - but I want to be optimistic.
Reading code is like reading the dictionary - you have to read half of it before you can go back and understand it.
Don't ruin it, you've got a good streak going.
"So long and thanks for all the fish."
Eventually we will see a national DNA registry. Something like this will be how it starts.
Actually, it started back in the late 90's with the D.A.R.E. program. Local law enforcement goes around to all the Grade Schools each year, and hands out a bunch of "Your children will be kidnapped and brutally raped, tortured, and killed unless..." literature. They use it to convince the parents to provide DNA (via mouth swabs), fingerprints, and photographs, and stuff it all into a "black" database. Which database is this? Well, it's the national LE database of course, where it lives forever.
Not if we set an example and kill everyone involved in making this decision, and their direct families.
And kill everyone that's had their DNA sampled, that way you can be certain that you're starting from a clean slate. Clearly it's the only way to be sure.
Our benevolent overloads, namely Slashdot, have decided, in their infinite wisdom, to move the links in some articles. To the right of the article title, in small font, is a name - it is where the story came from. You can now, also, click on that link and it will bring you to the article.
Brilliant work, those clever designers! It certainly didn't interrupt the user experience, cause confusion, or result in people making more informed comments. Their insight and ability to truly understand the user is often a source of great pride for these folks.
What really, really, impressed me most about this decision was their willingness to communicate the changes to the users in a meaningful and obvious way. I mean, yeah, they came right out and showed us in a nice clear post about this - it even told us why they were doing it. Not only that, they explained the many other changes. For a whole day, or two, I could click my username in the comments and be directed to the user control panel (and not to my profile's home page - that was insanely useful and a feature I'd been asking them to implement for months)!
Yes, yes I am bitter.
"So long and thanks for all the fish."
From TFA: "And CDPH says the blood spots are de-identified and can’t be tracked back to the child." I don't see the issue here. This helps with medical research.
Yes. Request away. I believe it will handled similarly to how the DHS handles requests to be removed from the no-fly list.
Sleep your way to a whiter smile...date a dentist!
Right there next to the subject.
I do believe I have a right to be secure in my person, papers, etc against an unreasonable search or siezure...
A bullet may have your name on it but splash damage is addressed "To whom it may concern."
Yes, your doctor at birth gets all these records, and it pretty much only applies to genetic diseases. Pre-disposition is a key word for racial demographics.
Sadly, your parents consented in some form or fashion while you lacked agency on account of not being born at the time.
Blood spots sent to research have been removed of all identifying information. Blood spots in our storage are still paired with their accession reference number. Law enforcement can request them through a lengthy process for identifying missing persons. I work at this agency, I am going to be commenting all night.
Yes! Though we get a pretty good STR set for babies.. the potential argument of DNA, nuclease and blood donor contamination pretty much rule out forensic application of these samples. I do the human identity testing for the CA Genetic Disease Screening Lab.
Children should have the right to share their DNA data, or not, when they are adults. Therefore if you are an adult and you had your DNA data taken you should have the right to issue a take-down order if you do not want your data property effectively put into the public domain against your wishes.
Do you think we are really 'that' competent at planting evidence. We fuck it up all the time.. I mean.. I just do lab work nothing to see here.
It's very key.. Actually they sell this to places like the red cross who extract it for cord blood which they then sell to organizations like the CDPH-GDSP-GDL at tremendous markup (no really, the price of innocent blood is not cheap, and we are not allowed to import it from China). Nothing about no clones in the freezer, forget about it.
pay to get the testing done. plenty of companies who will tell you if you're missing a chromosome. it's not standard practice because some people don't want to know - and oh well there is the thing about voodoo only working if you believe in it..
world was created 5 seconds before this post as it is.
Where's the warning label for this one then California?
How quaint. Show us your buckled shoes! Stick your foot thru the Freedom Cage (TM) bars.
cogito ergo innocent
DNA is the ultimate spaghetti code.
'Meet hot singles with compatible MHC haplotypes in your area!'
'Want to make those brown eyes blue? Visit airoptix.com today!'
'With perfect matches to sample profiles from seven different crime scenes on file at the FBI, Better Call Saul!'
DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties
Is the data identifiable? Meaning, can a donor be identified with a sample? That is the crux of the matter (and one the zealots in the interweebz seem keen to ignore.)
Is the data identifiable, then?
Yes: problem.
No: no problem.
Texas did this for many years, but got called out for it when it became clear that there were some transactions with the US Navy, using the dried blood samples for research. They were sued and had to eventually destroy 5 million samples
An article in Pediatrics from 2011, hosted at the US National Institute of Health, says that many states are still doing similar shady things with newborn blood samples, and that some don't even need to inform parents about how the samples are used after the initial testing is done.
"I must not fear. Fear is the mind killer." -Bene Gesserit Litany Against Fear
L'enfer, c'est California.
I'd not want to force my kids to get in the SS program if they didn't have to...claim the religious thing or something....
I didn't apply for one till a typing class like when I was in 9th grade.....but I heard the FEDs are trying to make parents register newborns now....?
Light travels faster than sound. This is why some people appear bright until you hear them speak.........
That isn't really fair for the poor people of this state, who are more likely to experience disease and need the help the most. Should we pay private companies to do the tests for everyone.. that is just what we do. As noted, the objection is storing the sample, or the data, I don't know.
They ask for SSNs for dependents on the income tax form. I don't know if you can get a deduction for a kid without one.
"When you have eliminated the unacceptable, whatever is left, however improbable, must be the truthiness" - Holmes
Sequencing such a large volume of samples is not - currently - technically or financially practical. In Michigan, if you jump through special hoops, you can get them to cough up the samples to you personally. That's what I'm doing, before they decide to start building a big sequence database (with 'appropriate protections', of course).
PHEM - party like it's 1997-2003!
No link to proof