California Owns, Collects, and Sells Infant DNA Samples | Hacker News Reader

California Owns, Collects, and Sells Infant DNA Samples

nakedsecurity.sophos.com

57 pointsmanyxcxi12 comments

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.

OP here, as a father of two (soon to be three) I'm all for the genetic screenings with the informed consent, it's what happens (or doesn't) afterward that worries me. The fact that the state claims ownership of this and sells the data out to whoever is what worries me. There should be a clear opt-in to allow them to preserve it with the default being the general statistics get record and the sample winds up in a dumpster.

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.

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.

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.

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.

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?

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.

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?

There is the matter of initial selection.

If this blood turns up at a crimescene, the police know that the person involved was "Born in California since 1983", a category which shrinks the suspect pool substantially, and can be linked via paternity and maternity to any close relative of someone born in California since 1983. If there are two or three such relatives and a precise fractional relationship can be determined (I'm assuming full sequencing), then the venn diagram of these family trees gets incredibly powerful, perhaps even powerful enough that traditional detective work is unnecessary.

AFAIK nearest relative I have that was born in California since 1983 is a cousin's two children.

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.... linked from the article to request their destruction. If the samples were not identifiable, then the CDHP would not know which sample to destroy...

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.

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