Waking up to the genetic surveillance state

DNA surveillance is here, and it’s spreading.
By Mark Hurst • August 19, 2022

A couple of months ago I noticed an unusual story in West Side Rag, a local news site for my Upper West Side neighborhood. Written by Andrea Flink, a senior fellow at Fordham Law School, the story from June 29 describes how the blood of newborn babies is collected by the state of New York:

The blood is drawn through a prick in the baby’s heel, then screened for 60 genetic disorders. Some blood remains after the screening, and this residual material – called blood spots, and containing the baby’s DNA – is shipped to a storage facility in Albany. And there it remains . . .

The blood collection is part of New York state’s mandatory newborn screening program. One detail worth noting is that parental consent is not required. There is a provision for families to formally opt out for religious reasons, but otherwise the newborn’s blood will drawn and analyzed.

Now, to state the obvious: there are good reasons to screen newborns. One small blood sample can test for any number of disorders, as linked above, so detection right after birth is especially important. Like any public health measure, there are benefits both for the family and the wider community.

But there’s a twist. One might reasonably expect that the blood would be discarded soon after the screening is complete. After all, the test is meant to ensure that the baby is healthy, and if not, to flag any disorders right away. But after that, one would think, the sample is no longer necessary – right?

Take another look at the quote above: in the New York program, “the baby’s DNA is shipped to a storage facility in Albany [the state capital]. And there it remains . . .” Think: why would the baby’s blood need to be stored? Maybe, one would guess, it’s only kept temporarily, just in case there’s a problem with the screening which then has to be repeated on the sample. So: How long do you think the state of New York holds on to newborn blood samples?

Maybe six months.

Maybe a year.

Could it be longer?

Now is when I reveal why the West Side Rag story stuck in my head, and what prompted me, back on June 30, to post it to our Forum, so that Creative Good members could see the news. In the state of New York, for the mandatory screening program, newborn blood samples are stored for... twenty-seven years. Thus a program supposedly ensuring the health of newborns is extended – without parental consent – to the point when those “newborns” are old enough to have kids of their own.

This newborn screening program, while no doubt launched with good intentions, is playing a role in a much bigger project that deserves more attention. State by state, the US is building a genetic surveillance state. Your DNA is a unique marker that you leave everywhere, and the state wants the ability to follow along.

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Blood and data

As for the newborn blood samples, the state claims that they’re all anonymized, in that they’re stored in a way that makes re-identification impossible. Which is, to put it politely, bull. It’s the same defense given by Big Tech – and its vast swamp of surveillance-capitalist partners – when asked why they’re collecting, analyzing, and storing data on all of us. There’s a long history of studies showing that “anonymized” data can easily be processed to identify individuals in the data set. (For one of many examples, see this story in The Markup.)

I want to pause here and add that it’s not just New York that collects citizens’ DNA at birth.

• It’s happening in California: see the 2020 CBS News story California Storing Newborn DNA Without Consent, or before that in 2015, DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties. Apparently California stores newborn blood not for 27 years but indefinitely.

• It’s happening in Michigan: see the story about Michigan’s storing of babies’ blood deemed unconstitutional (Aug 27, 2021).

• It started awhile ago in Texas, where the screening program drew a 2010 lawsuit about alleged misuse of newborn blood spots.

• It’s happening in New York City, separate from the state program: see New York City’s Unauthorized DNA Database (August 8, 2022, also by Andrea Flink in West Side Rag). Also in NYC, the New York Times ran a boosterish piece (August 12, 2022) praising Mount Sinai Health System’s partnership with Regeneron, a pharma company. (Patient consent is called “cumbersome” – while readers are assured that DNA data is “rendered anonymous.”)

• And finally, it’s happening in New Jersey.

New Jersey is where the story really comes together, because up to this point, I haven’t described exactly why these states (and one city) would want to hold onto DNA, potentially identifiable to the individual, for decades.

On August 3, Gothamist published a story involving New Jersey’s Newborn Bloodspot Screening program. It’s much like New York’s program, except in New Jersey, babies’ blood is apparently kept on file not for 27 years but “only” for 23. This period of time is plenty for the state to make use of DNA samples... in police investigations.

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As Wired put it on August 15: Police Used a Baby’s DNA to Investigate Its Father for a Crime. The story describes how police, seeking a suspect’s DNA but lacking a search warrant, used the newborn blood sample from the suspect’s son, born years earlier:

[P]olice had reopened an investigation into a cold case and had used genetics to place the suspect within a single family: one of several adults or their children. But police didn’t yet have probable cause to obtain search warrants for DNA swabs from any of them. Instead, they asked the state’s newborn screening lab for a blood sample of one of the children.

This is obviously concerning: the newborn blood samples were supposed to screen for diseases! – and they were supposed to be totally anonymous! – yet here we see that police were easily able to access the blood sample of a specific individual, and then use the DNA for purposes other than public health. (See also the New Jersey Monitor coverage that broke the story in July, and the ACLU analysis.)

This is the beginning of the genetic surveillance state:

• mandatory DNA samples at birth for all (newborn) citizens, “purely for the baby’s health,” with no parental consent needed

• strong encouragement for all other citizens to submit their DNA (as in the Mount Sinai/Regeneron program), “for research purposes,” with dark patterns used to make it “frictionless” for patients to give their consent to genetic surveillance

• all samples stored for decades, or indefinitely

• DNA data stored in opaque government and corporate-partner databases, with citizens given little or no power to access or delete their data

• police given full access to the DNA data, even without a warrant

• then, all other government bodies given full access

• then, all corporate partners given full access

• finally, once the database has been hacked, all shady third parties and foreign governments (after paying for the download) given full access to your DNA data

• meantime, DNA-detection sensors optimized, miniaturized, and normalized to the public, allowing the surveillance state (all government and corporate bodies listed above) to have full access to your location, activities, health, relationships, and all other markers derived from that data

Oh, and as for you, a lowly citizen of the genetic surveillance state? Once the DNA database is hacked, good luck filling out the forms to get yourself a new genome.

But maybe I’m overstating the situation. Maybe this is just a case of a few police investigations, and a few genetic research projects, and the truth is that the government – and companies like Google and Amazon – really have no desire for widespread DNA capture and analysis. Maybe. But from the news coming out of New York, and California, and Texas, and Michigan, and New York City, and New Jersey, and who knows where else . . . I wouldn’t get too comfortable.

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Until next time,

-mark

Mark Hurst, founder, Creative Good – see official announcement and join as a member
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