
California Owns, Collects, and Sells Infant DNA Samples - manyxcxi
https://nakedsecurity.sophos.com/2015/11/12/california-collects-owns-and-sells-infants-dna-samples/
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UnoriginalGuy
We aren't in California. We opted for this kind of generic screening even with
informed consent.

I think people should be given the choice, but detecting over 65 diseases from
one pin prick is very good "value." If they're using that data in an
anonymised form for research, meh, whatever.

I do have some minor concerns related to police use of the data, as police
have a history of misusing DNA and or misunderstanding the significance of a
match or partial match. People have been convicted ONLY based on DNA and
supposition, and that isn't scientifically sound.

Plus who knows when we'll get all Minority Report/Gattaca and start trying to
predict crime/health/intelligence based on DNA.

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Amorymeltzer
Seven states offer that data up for research, often with _no informed parental
consent_ ; four charge a fee for it. There is no requirement to be informed
and no assurance that the sample/data can be destroyed. Research without
informed consent is not, and should never be allowed.

These samples are increasingly a huge amount of personal data; de-identified
genetic data doesn’t exist.

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DrScump
Exactly. It would be different if the data given was limited to the specific
segments relevant to the research rather than the whole genome.

Look at what advertisers are doing with web tracking, beacons, cookies, etc.:
taking slices of your privacy and assembling them into a coherent,
individualized profile that is the sum of each info-leak's parts.

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refurb
This example makes no sense to me:

 _Had he not been tested he would have been severely brain damaged, possibly
would have had heart and kidney problems. If blood spots hadn’t been saved,
they wouldn’t have been able to make the test that saved my child’s life._

They used these blood spots to _develop_ the test? How would they do that?
Sure they have a blood/DNA sample, but they don't know what the patient's
state of health is. How do they connect it? And if they needed to check the
patient's health they could just take a blood sample.

I think the newborn screening program is very valuable. However, I'm not sure
if they've adequately explained why they need to keep these blood samples
forever.

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Amorymeltzer
When a problem arises, in some cases the samples from that individual can be
pulled and tested. What generally happens is:

>Patients with identified issue come in. Blood spots pulled.

>Healthy individuals serving as controls sign-up. Blood spots pulled.

>Both sets are tested (double-blind, anonymized health status) and hopefully
something is found.

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refurb
But if a patient goes to their doctor with a problem, why not just get a blood
sample then. Why send a request to some storage facility to pull a blood
samples from years ago?

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tedunangst
I think what's meant is they need the heel prick today to _do_ the test, but
they need a large sample of control subjects to _make_ the test.

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grecy
The article says the samples are "de-identified", but then says Law
Enforcement are buying them.

Why would law enforcement buy the samples if they're de-identified?

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mrb
Read carefully. The samples are NOT de-identified in the CDPH storage bank
itself. They are de-identified only when sold to third-parties: _" Besides
being sold - in purportedly de-identified form - to third parties [...]"_ This
means the CDPH and law enforcement have access to fully identifiable DNA
samples.

Another element implying that DNA samples are identifiable is the existence of
this form
[https://www.cdph.ca.gov/pubsforms/forms/CtrldForms/cdph4410....](https://www.cdph.ca.gov/pubsforms/forms/CtrldForms/cdph4410.pdf)
linked from the article to request their destruction. If the samples were not
identifiable, then the CDHP would not know which sample to destroy...

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scurvy
Has anyone asked to have their child's sample destroyed and received a
response from CDPH that it was? Did you mail or email the form?

Asking since I'm about to be a parent in a few days and definitely want the
sample destroyed.

