
DNA of every baby born in California is stored. Who has access to it? - georgecmu
https://www.cbsnews.com/news/california-biobank-dna-babies-who-has-access
======
mwilliaams
I can comment on this firsthand. I was born in a hospital here in California,
so my DNA was collected. A couple years ago I heard about this program, which
I believe to be a gross violation of privacy and overstepping of authority. I
read somewhere that you can have your/your child's sample destroyed by filling
out a form and sending it to a state health agency (don't remember the
specific one now). You have to provide name, date of birth, and the name of
the hospital. I did so, and perhaps a month or two later I received a letter
saying that my sample had been destroyed. Clearly these samples are not de-
identified if they are able to be located with the info provided.

I think this program is utterly disgusting. It's a terrible violation of
privacy. The DNA of every baby (born in an actual medical institution) is
collected, tested for whatever, and then _stored indefinitely._ There is no
opt-in or opt-out as far as I'm aware, just that you can later have the sample
destroyed _if_ you happen to hear about this program and go to the effort of
finding out how to do it. This is some disgusting Orwellian BS.

~~~
ApolloFortyNine
I think it's an extreme overstep as well, but I do believe it's possible the
data is anonymous. A secure hash of the fields you were talking about would
make it possible to lookup when given the correct information, but impossible
to reverse.

Of course, it's just as likely, this already being a government program and a
massive overreach at that, that your identifying data is stored in plain text.
I just wanted to throw out it's possible it's not.

~~~
avn2109
Realistically, the odds are vanishingly small that various security-themed
agencies aren't already ingesting all the DNA data. This is a treasure trove
in the eyes of a police state.

~~~
lostlogin
After the Golden State Killer episode, it’s now probably seen as cheaper for
them to just contact companies like 23andme.

~~~
toomuchtodo
I’m surprised 23andme doesn’t start marketing directly to law enforcement
agencies, to cast a wider net then CODIS familial searches would.

------
jedberg
I had a kid a year ago, and another one three years ago. Both had this test.

Their mom probably wouldn't remember if you asked her. She's not really a good
person to ask. You should be asking the partner who was there for the birth,
since we're the one that actually sees it happen (they were still stitching up
my wife when the test was done).

For the second kid (because I was just in a daze for the first kid), being the
paranoid security person that I am, I asked what happens to the sample and
what kind of controls are placed on the sample. I also asked if I could opt
out. I was told that I could not opt out and that the sample becomes the
property of the State and there is nothing I could do about it.

This article was the first I learned that I could request it be destroyed. It
is also the first time I'm learning it could be used for research (but I kind
of assumed that was why they kept it in the first place, other than to add to
a database for matching with potential criminal activity).

So thanks for posting this, now I have to figure out how to request the
samples. I'm going to see if I can actually the spots back.

~~~
thankthunk
> I was told that I could not opt out and that the sample becomes the property
> of the State and there is nothing I could do about it.

That is so disgusting. For all the talk about individuality and liberalism,
it's amazing how liberal societies are so authoritarian and controlling.

If you don't own your DNA, then what do you own? But I guess big brother knows
what's best for us.

~~~
zo1
Well, when you don't own the majority of the fruits of your own labor, then
I'd say your "DNA" is a drop in the bucket in comparison. But yeah, precisely
how you feel is how Libertarians and other actual free-minded individuals feel
about concepts such as taxation.

Personally, I don't see DNA as that intrinsic or important as others do. It's
just a piece of information about the composition of my body. Sure, if they
could completely clone my brain and the essence of what I am, then I could get
behind something like this. But as is, I'd just be peeved that someone gets to
"use" my DNA. Same way I get peeved that Google/Facebook "use" my browsing
habits to train their ML algorithms.

~~~
jurassic
I’m most worried that in the future our DNA could be used by health insurers
the way financial institutions use credit scores. Those with genetic
predisposition to expensive conditions might never be insureable.

~~~
maxerickson
That would be _society_ doing that, not just insurance companies.

Just like before the ACA it was society at large that didn't worry too much
about people being dropped from insurance. Sure, people moralize about how
awful it is, but then they take the policy with the lower rate instead of the
better underwriting.

------
tehgdogg
_" 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 and not Federal law?

2) Is there a state that has a track record of taking privacy more seriously?

Despite caring deeply about my privacy I've let it steadily erode with the
rise of "customers are the product" type services. Between this and Cambridge
Analytica it seems that the US is surprisingly bad at protecting citizens'
privacy. I'd like to know if it's possible to live in the US without
essentially waiving my right to keep personal information personal.

~~~
amarshall
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...](https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_University_of_California)

~~~
ApolloFortyNine
Wow, reading through that case it seemed like it should have been a slam dunk
for Moore. It appears that we literally have more rights over our personal
information than we do over our DNA.

------
apo
The article states that parents can request the blood spot sample to be
destroyed. A link is given.

 _You do have the right to ask the biobank to destroy the leftovers after the
fact, though the agency 's website states it "may not be able to comply with
your request."_

Following the link, I saw no evidence that parents can request destruction of
the sample. Instead, this is what I saw:

 _You have a right to ask the Newborn Screening Program not to use or share
your or your newborn’s information and /or specimen in the ways listed in this
notice. However, we may not be able to comply with your request._

[https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.a...](https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.aspx)

I also haven't been able to find information on the process a parent can
follow to get the sample destroyed.

Not using a sample is not the same thing as destroying it. What am I missing?

~~~
znpy
> You have a right to ask the Newborn Screening Program not to use or share
> your or your newborn’s information and/or specimen in the ways listed in
> this notice.

Shouldn't this be the default?

------
trollian
This is how we found out that my daughter has cystic fibrosis and have been
able to treat her from a few weeks after birth. The result is that she'll
probably live a normal length life rather than dying in adolescence.

So I'm fairly positive on this program...

~~~
greglindahl
Why are people downvoting this comment? Even if you think the current system
is wrong, you should be thinking of how to fix it without losing the benefit
outlined by this commenter.

~~~
djsumdog
Because you can determine this information and then not store the DNA.

~~~
greglindahl
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.

~~~
jasonlotito
While I hate getting meta and discussing voting in HN comments, the best thing
to do in the future is instead of asking why votes are going in one direction
or another, instead, either vote yourself, or if it calls for it, offer up on-
topic commentary. Comments that stir good on-topic discussion should never be
down voted, regardless of whether you disagree with them or not, or even if
they are missing a point.

Down voting a comment like the parents is, at best, insulting the very premise
of good HN discussions.

~~~
greglindahl
I hate getting meta, too, and I almost always vote up instead of commenting.

In this case I'm pretty disappointed by the replies I got to my question.

------
sonotathrowaway
“”” "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.

~~~
shanghaiaway
Obviously the number references your name in another register. Otherwise you
wouldn't be able to request to have the sample returned. Got to love American
state propaganda.

~~~
jjeaff
Doesn't sound like propaganda to me. Seems clear. When samples for out to
researchers, they only get the sample and no way to look up who it belongs to.

However, officials who have access to the registry could obviously look you
up. Hopefully there are controls in place to keep those same officials from
having samples tested, but 8 doubt it.

~~~
shanghaiaway
Not clear at all. FUD. The existence of this registry is never mentioned in
the article which makes it sound like samples are unidentifiable.

~~~
jjeaff
Ya, not clear if you didn't read it. The article clearly talks about the
registry. It says that the registry is stored in a separate building from the
samples.

~~~
shanghaiaway
Makes no difference whatsoever.

------
oliv__
_> If you or your child was born in California after 1983, your DNA is likely
being stored by the government_

How ironic that this began right after 1983.

------
basicplus2
It seems we have a similar issue in Australia...

[https://www.mja.com.au/journal/2011/194/6/newborn-
screening-...](https://www.mja.com.au/journal/2011/194/6/newborn-screening-
cards-legal-quagmire)

and this

"19.16 In 1999, the Senate Legal and Constitutional Legislation Committee
referred to newborn screening card collections as ‘inadvertent DNA sample
banks’, noting that identified blood samples containing genetic material from
almost all people under the age of 28 are currently stored in most States and
Territories."

[https://www.alrc.gov.au/publications/19-human-tissue-
collect...](https://www.alrc.gov.au/publications/19-human-tissue-
collections/types-human-tissue-collections)

~~~
andreasley
And in Switzerland [1] (text in german). Blood samples from newborn screenings
are stored for 30 years. For the screening to take place, the parents' oral
consent is required. Opting out of the screening or blood archival is VERY
rare. Though personal information is destroyed after analysis, attribution is
still possible using LIMS (an electronic laboratory database).

As far as I understand, access to this data is generally restricted [2].

"If illnesses occur later, which can be clarified via tests on this sam­ple,
the responsible physician can request it from [Children's Hospital Zurich].
Part of the remaining material may also be used by the screening labora­tory
during quality control measures and for the development of new research
methods. In this case, the samples will be anonymous, having undergone a
procedure to make them unidentifiable." [3]

[1]
[https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name...](https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name=RRB-2017-1053&year=2017&_charset_=UTF-8)
[2] [https://www.admin.ch/opc/en/classified-
compilation/20011087/...](https://www.admin.ch/opc/en/classified-
compilation/20011087/index.html#a7) [3]
[http://www.neoscreening.ch/display.cfm/id/100489/disp_type/d...](http://www.neoscreening.ch/display.cfm/id/100489/disp_type/dmssimple/pageID/80690)

------
stmfreak
The day will come when DNA sequencing is so fast and affordable, that the
storage fees for all these samples will be less (over some period of time)
than the cost of sequencing each sample and storing a digital copy. Indexed,
identified, searchable.

Then we're really going to have some interesting privacy concerns.

------
techsupporter
> 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 researchers"
(in quotes because, as the article points out, that term is _supposed_ to mean
scientists operating under a code of ethics but, yeah).

I dunno, folks, it sure seems like nobody really gives a damn about private
information unless it's being used to link them to a scandal and then they
_really_ care.

~~~
bigbugbag
You can safely assume that google, facebook and data brokers have it.

~~~
jhall1468
You can never "safely assume" a wild accusation with absolutely zero proof.

~~~
akvadrako
You can "safely assume" bigbugbag just made up that rule.

------
cobbzilla
Home births are popular in California (well, relatively speaking anyway); has
anyone had a baby at home & did the state come asking for DNA when you went to
get a birth certificate or some other time?

~~~
rsync
My wife and I had children at our home in California in both 2013 and 2014.

No, California did not seek any kind of test or diagnostic results (or
anything like this). It was never mentioned and this is the first I have ever
heard of it.

------
ptype
In Sweden a blood repository from babies has already been used by law
enforcement for DNA matching purposes [1], even though that was not the
intended purpose of the repository.

[1]
[https://sverigesradio.se/sida/artikel.aspx?programid=2054&ar...](https://sverigesradio.se/sida/artikel.aspx?programid=2054&artikel=6487518)

------
everdev
Not accurate. We had our baby at home and his DNA was never collected.

------
j_says
If you want your baby screened but don't want your state to keep the sample,
the mayo clinic has a screening panel that does all the federally recommended
tests, and another one that does this and a bunch more.

The doctors at Kaiser were totally useless when I asked about this: they'd go
from "gee, I never heard about this" to "shrug, it's an official state
program", and then they piled on the guilt trip about how urgent it is once my
kid was born and I was sleep deprived. Bastards.

So you have to research it yourself and get a pediatrician to order the test
from Mayo before your child is born, so it's all arranged once you're in
labor. Then make sure they use that test, and you opt out of the state test.
(Or better yet, if your state claims it's mandatory, refuse the test and if
they do it anyway you've got casus belli for a constitutional challenge)

------
buza
My wife gave birth last year in California, and immediately upon returning
home, we located the paperwork for requesting the DNA be destroyed and
submitted it. We received a response telling us that our request was received,
but that's all. Unfortunately neither of us can remember where to find the
form we needed to send it to request it be destroyed. Maybe it was in the
hospital paperwork?

------
djsumdog
> Nearly every baby born in the United States gets a heel prick shortly after
> birth. Their newborn blood fills six spots on a special filter paper card.
> It is used to test baby for dozens of congenital disorders that, if treated
> early enough, could prevent severe disabilities and even death.

This almost feels like a scene taken right out of the movie Gattica.

~~~
roel_v
What? That newborns are checked for congenital diseases? How is that anything
but normal?

~~~
bigbugbag
Why would it be normal ?

~~~
mentalhealth
The way many metabolic conditions work is that essential products are not
synthesized, or toxic products are not cleared. These can cause unrecoverable
damage within hours or days of birth if not treated. So, tests are performed
to identify known metabolic conditions to prevent newborns from suffering
unrecoverable brain/otherwise damage. This is generally known as "newborn
screening" if you are curious to learn more.

~~~
hardwaresofton
Not OP but maybe the question is more "why is the state doing this and keeping
the samples" not "why is it useful"...

------
skierscott
> Some states destroy the blood spots after a year, 12 states store them for
> at least 21 years.

What are the other 12 states?

~~~
hawkice
Presumably those that store the spots for between 1 and 21 years.

------
exabrial
_How on earth_ is this legal in the USA?

~~~
bdowling
The default in the U.S. is that actions are legal unless they're made illegal
by some law. There's no law against this, therefore it's legal.

~~~
dannyw
We need a GPDR for biometrics.

~~~
mtgx
That's the problem right there.

It seems the best the U.S. political system can come up with right now is
"GDPR for X" where X represents only a few specific industries, because of
strong entrenched special interests, lobbying and legalized bribery, which
means strong gridlock and disagreement for a more "universal" law. Because the
more industries the law would affect, the more billion-dollar corporations
would fight against it with TV ads, lobbying and vote buying (sorry, I mean
"campaign donations").

GDPR generally applies to _all_ personal data of a citizen. The best I've seen
from the U.S. government so far is the Consent Act, which applies only to
online services only. It doesn't apply to ISPs, network providers, medical
data, or a ton of other things it _should_ apply to.

The more people realize that this "single issue" of taking money out of
politics and drastically reducing or eliminating a corporations' influence on
political decisions affects _every other issue_ they care about, the better.

------
throwaway84742
Pretty sure there will be a lawsuit. What kind of Gattaca/1984 bullshit is
this, the state where everything causes cancer? How did CA techies not rebel
about this?

------
apexalpha
so this article got me thinking: how is this in my country? Some perspectives
perhaps:

\- Every sample is kept in the screening lab and destroyed after 5 years.

\- year 1 is used to (double checking) of the test results

\- following years the sample is used for anonymized research

\- explicit approval is needed from parents for non-anonomized research with
the blood samples.

\- every parent has the option to opt out of 4 years research; the sample will
be destroyed after the first year if opted for.

Idk why, was just curious.

------
tzakrajs
Everyone will have access to it given enough time.

------
whataretensors
What's up with the hoarding and secrecy of medical data? It's real possibility
that AI starts to work and solves all diseases in the next few decades. Maybe
that's the point? To horde life-extension and immortality inventions.

~~~
chillydawg
Because it's perfect for discriminating against you. First it's health
insurance company putting your prices up due to poor genes, then it's an
employer getting rid of you because they see genes for depression and
addiction.

~~~
whataretensors
Discrimination in regards to all sorts of attributes are illegal. Including
one of the most useful measurements for predicting job performance, IQ.

You don't need to select for depression and addiction explicitly, companies
implicitly do this by forcing normal working hours on their employees.

Insurance is a stochastic tax on the young and healthy to benefit the old and
unhealthy. If it's decoupled from employment I don't see why an employer would
care. Also, why shouldn't we use all information to predict costs and risk?

This whole medical data hoarding might be a "what if" scenario on AI and
immortality.

------
burntrelish1273
Fuck this. Water-birth at home. The government can fuck right off.

