12 ms·

DNA of every baby born in California is stored. Who has access to it?

223 points by georgecmu 8y ago

buza 8y ago
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?
exabrial 8y ago
How on earth is this legal in the USA?
- tehlike 8y ago
  I asked this before: https://news.ycombinator.com/item?id=16939020 https://news.ycombinator.com/item?id=16939020 Looks like there is not an easy way out.
- perfmode 8y ago
  You say that as though the United States is a place where bad things shouldn’t happen.
- lightedman 8y ago
  Lazy people who refuse to actually sue because they're too busy with everyday life to handle civic life.
- deleted 8y ago
  [deleted]
- bdowling 8y ago
  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 8y ago
    We need a GPDR for biometrics.
    - mtgx 8y ago
      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.
    - bigbugbag 8y ago
      How a European law would help with a situation in California ? You do realize that GPDR does not apply in the US, right ?
      - newfoundglory 8y ago
        Well, obviously they realize that, smarty pants. Because the existing GPDR already covers that in Europe...it’s like they’re saying the US needs one.
  - dragonwriter 8y ago
    More specifically, in this case, state governments have general police powers, which means that anything not specifically prohibited to them by the federal Constitution (including by a federal law that is a valid exercise of federal power under the Constitution because of the Supremacy Clause) is within their power.
- djsumdog 8y ago
  The UK collects DNA on anyone who has been convicted of a crime: https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Database https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Da...
  - cft 8y ago
    At least one could argue that a person has a choice: to commit or not to commit a crime. But a newborn does not have a choice to have its DNA collected. This is the worst violation of privacy I have ever read about in my life. And I find not that surprising that CA is one of the few states where this is practiced.
    - blattimwind 8y ago
      > This is the worst violation of privacy I have ever read about in my life. I dimly remember some private schools using school laptops to take naked photos of their underage students.
      - cft 8y ago
        But that was probably criminal and not mandated at the state level! It makes me very very scared of the benevolence and of the thought process of CA government.
      - DanBC 8y ago
        https://en.wikipedia.org/wiki/Robbins_v._Lower_Merion_School_District https://en.wikipedia.org/wiki/Robbins_v._Lower_Merion_School... It was pretty bad. Especially because an intern raised concerns beforehand, and those concerns were dismissed as alarmist.
    - bigbugbag 8y ago
      Actually pretty much everybody has committed a crime, sometimes unwittingly but still.
    - Broken_Hippo 8y ago
      Only they take it when you were arrested, not when you are convicted. Anyone can get arrested - it doesn't take you committing a crime for this to happen. Innocent people get arrested. Sometimes, folks are accidentally guilty. Bag of drugs in your back seat, dropped by that workmate you drove to lunch? It is your problem now. Not to mention the way the system is run in the US, innocent people wind up convicted. Some folks convict themselves voluntarily because getting arrested and waiting in jail for a trial can do some major life damage.
tzakrajs 8y ago
Everyone will have access to it given enough time.
trollian 8y ago
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...
- megaman22 8y ago
  I hope that her chemo and radiation regimes were light. I worry very much that mine have shortened my life expectancies.
  - Godel_unicode 8y ago
    They would have been non-existent since neither chemo nor radiation have any bearing on CF. https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/diagnosis-treatment/drc-20353706 https://www.mayoclinic.org/diseases-conditions/cystic-fibros...
- greglindahl 8y ago
  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 8y ago
    Because you can determine this information and then not store the DNA.
    - greglindahl 8y ago
      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.
      - matthewmacleod 8y ago
techsupporter 8y ago
> 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 8y ago
  You can safely assume that google, facebook and data brokers have it.
  - xevb3k 8y ago
    The article discusses a Biobank which stores physical spots of blood. They are not as far as I can tell suggesting every baby is sequenced. While rapidly getting cheaper (probably between 1 and 3 thousand USD all inc) this would still be an expensive exercise.
    - akvadrako 8y ago
      You don't need a complete sequence to get most of the currently useful data, and those sequences will probably be done in due time.
      - xevb3k 8y ago
        The article doesn’t mention and routine sequencing at all. I think it’s unlikely that someone has paid to sequence, even the exosomes of these individuals... who knows though!
        8y ago
djsumdog 8y ago
> 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.
- bigbugbag 8y ago
  Gattaca. there's no i in dna sequencing. Gattaca took real world and extrapolated a little to give us a glimpse in the future so we know what to expect and not let it happen.
- roel_v 8y ago
  What? That newborns are checked for congenital diseases? How is that anything but normal?
  - bigbugbag 8y ago
    Why would it be normal ?
    - cududa 8y ago
      If you have technology to save a child’s life using simple modern medicine why would you not?
      - DanBC 8y ago
        Doing the tests is one thing. Keeping the samples, and telling parents that the samples can't be destroyed, is something else. Also, do we know if this actually results in lower mortality?
        throwahey 8y ago
        I would lean towards no. I've seen state research based on flimsier data. In this case, infant mortality which has been going down historically could be connected to anything. Perhaps carbon levels in the atmosphere were the cause.
tehgdogg 8y ago
"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 8y ago
  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_University_of_California https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...
  - tehgdogg 8y ago
    Thanks I appreciate the information.
  - ApolloFortyNine 8y ago
    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.
- bsenftner 8y ago
  The USA only protects one type of citizen: the corporate citizen. Human citizens are like a 3rd world country here. Those human citizens who want better treatment own or control corporations, and gain their entitlement through them. This is the United States of America.
basicplus2 8y ago
It seems we have a similar issue in Australia... https://www.mja.com.au/journal/2011/194/6/newborn-screening-cards-legal-quagmire https://www.mja.com.au/journal/2011/194/6/newborn-screening-... 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-collections/types-human-tissue-collections https://www.alrc.gov.au/publications/19-human-tissue-collect...
- andreasley 8y ago
  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=RRB-2017-1053&year=2017&_charset_=UTF-8 https://www.zh.ch/bin/ktzh/rrb/beschluss.pdf?rrbNr=1053&name... [2] https://www.admin.ch/opc/en/classified-compilation/20011087/index.html#a7 https://www.admin.ch/opc/en/classified-compilation/20011087/... [3] http://www.neoscreening.ch/display.cfm/id/100489/disp_type/dmssimple/pageID/80690 http://www.neoscreening.ch/display.cfm/id/100489/disp_type/d...
skierscott 8y ago
> 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 8y ago
  Presumably those that store the spots for between 1 and 21 years.
sonotathrowaway 8y ago
“”” "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.
- stinkbug 8y ago
  >if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically. It said the studies have to be approved by a review board and that the researchers have to agree to destroy or return the samples when they're done. I don't think we should cynically assume "he knows the answer is yes." He may be hedging simply because he knows it relies on the word of the researchers. But biomedical researchers have been sensitized to issues of research ethics much longer than internet/data science practitioners. There can be significant penalties for procedural violations and in my experience people do not tend to play fast and loose with the rules.
  - sonotathrowaway 8y ago
    > that the researchers have to agree to destroy or return the samples when they're done. So just like Cambridge Analytica, and I assume he’s going to appear on tv with that same stupid look on his face when he feigns surprise that he ‘suggestions’ get ignored? >He may be hedging simply because he knows it relies on the word of the researchers. Yea that’s exactly my point. He is literally the person selling this information, and who is in charge. He structured the terms of sale for his benefit. I hold him responsible for the consequences of his actions, irregardless of whether or not he tries to use ignorance or negligence as his defense. Honestly, I am basing my opinion of him on his attempt to convince me that my DNA isn’t personally identifiable. That really summed up his intellectual integrity for me.
jedberg 8y ago
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.
- dlg 8y ago
  Would anyone here be interested in a lawsuit and/or campaign to get this changed?
  - NHern031 8y ago
    Not being able to opt your child out of DNA collections seems like what could be a slippery slope to a Brave New World. What's even worse is the level of misinformation surrounding the situation. Even if the samples are held under the assumption that they will be used for research, one should be entitled to opt-in, opt-out, and know what is happening with their/their child's DNA. A lawsuit here seems reasonable if not to stop this, to atleast shed light on the situation.
    - gcb0 8y ago
      opting out of proven good health measures sound like anti-vaxer, but ensuring the state have apropriate privacy safeguards is paramont
everdev 8y ago
Not accurate. We had our baby at home and his DNA was never collected.
throwaway84742 8y ago
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?
oliv__ 8y ago
> 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.
ptype 8y ago
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&artikel=6487518 https://sverigesradio.se/sida/artikel.aspx?programid=2054&ar...
burntrelish1273 8y ago
Fuck this. Water-birth at home. The government can fuck right off.
apo 8y ago
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.aspx https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.a... 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 8y ago
  > 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?
mwilliaams 8y ago
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 8y ago
  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 8y ago
    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 8y ago
      After the Golden State Killer episode, it’s now probably seen as cheaper for them to just contact companies like 23andme.
cobbzilla 8y ago
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 8y ago
  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.
whataretensors 8y ago
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 8y ago
  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 8y ago
    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.
stmfreak 8y ago
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.
apexalpha 8y ago
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.
j_says 8y ago
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)

223 points by georgecmu 8y ago

buza 8y ago

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?

exabrial 8y ago

How on earth is this legal in the USA?

tehlike 8y ago
I asked this before: https://news.ycombinator.com/item?id=16939020 https://news.ycombinator.com/item?id=16939020 Looks like there is not an easy way out.
perfmode 8y ago
You say that as though the United States is a place where bad things shouldn’t happen.
lightedman 8y ago
Lazy people who refuse to actually sue because they're too busy with everyday life to handle civic life.
deleted 8y ago
[deleted]
bdowling 8y ago
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 8y ago
  We need a GPDR for biometrics.
  - mtgx 8y ago
    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.
  - bigbugbag 8y ago
    How a European law would help with a situation in California ? You do realize that GPDR does not apply in the US, right ?
    - newfoundglory 8y ago
      Well, obviously they realize that, smarty pants. Because the existing GPDR already covers that in Europe...it’s like they’re saying the US needs one.
- dragonwriter 8y ago
  More specifically, in this case, state governments have general police powers, which means that anything not specifically prohibited to them by the federal Constitution (including by a federal law that is a valid exercise of federal power under the Constitution because of the Supremacy Clause) is within their power.
djsumdog 8y ago
The UK collects DNA on anyone who has been convicted of a crime: https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Database https://en.wikipedia.org/wiki/United_Kingdom_National_DNA_Da...
- cft 8y ago
  At least one could argue that a person has a choice: to commit or not to commit a crime. But a newborn does not have a choice to have its DNA collected. This is the worst violation of privacy I have ever read about in my life. And I find not that surprising that CA is one of the few states where this is practiced.
  - blattimwind 8y ago
    > This is the worst violation of privacy I have ever read about in my life. I dimly remember some private schools using school laptops to take naked photos of their underage students.
    - cft 8y ago
      But that was probably criminal and not mandated at the state level! It makes me very very scared of the benevolence and of the thought process of CA government.
    - DanBC 8y ago
      https://en.wikipedia.org/wiki/Robbins_v._Lower_Merion_School_District https://en.wikipedia.org/wiki/Robbins_v._Lower_Merion_School... It was pretty bad. Especially because an intern raised concerns beforehand, and those concerns were dismissed as alarmist.
  - bigbugbag 8y ago
    Actually pretty much everybody has committed a crime, sometimes unwittingly but still.
  - Broken_Hippo 8y ago
    Only they take it when you were arrested, not when you are convicted. Anyone can get arrested - it doesn't take you committing a crime for this to happen. Innocent people get arrested. Sometimes, folks are accidentally guilty. Bag of drugs in your back seat, dropped by that workmate you drove to lunch? It is your problem now. Not to mention the way the system is run in the US, innocent people wind up convicted. Some folks convict themselves voluntarily because getting arrested and waiting in jail for a trial can do some major life damage.

tzakrajs 8y ago

Everyone will have access to it given enough time.

trollian 8y ago

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...

megaman22 8y ago
I hope that her chemo and radiation regimes were light. I worry very much that mine have shortened my life expectancies.
- Godel_unicode 8y ago
  They would have been non-existent since neither chemo nor radiation have any bearing on CF. https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/diagnosis-treatment/drc-20353706 https://www.mayoclinic.org/diseases-conditions/cystic-fibros...
greglindahl 8y ago
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 8y ago
  Because you can determine this information and then not store the DNA.
  - greglindahl 8y ago
    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.
    - matthewmacleod 8y ago

techsupporter 8y ago

> 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 8y ago
You can safely assume that google, facebook and data brokers have it.
- xevb3k 8y ago
  The article discusses a Biobank which stores physical spots of blood. They are not as far as I can tell suggesting every baby is sequenced. While rapidly getting cheaper (probably between 1 and 3 thousand USD all inc) this would still be an expensive exercise.
  - akvadrako 8y ago
    You don't need a complete sequence to get most of the currently useful data, and those sequences will probably be done in due time.
    - xevb3k 8y ago
      The article doesn’t mention and routine sequencing at all. I think it’s unlikely that someone has paid to sequence, even the exosomes of these individuals... who knows though!
      - 8y ago

djsumdog 8y ago

> 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.

bigbugbag 8y ago
Gattaca. there's no i in dna sequencing. Gattaca took real world and extrapolated a little to give us a glimpse in the future so we know what to expect and not let it happen.
roel_v 8y ago
What? That newborns are checked for congenital diseases? How is that anything but normal?
- bigbugbag 8y ago
  Why would it be normal ?
  - cududa 8y ago
    If you have technology to save a child’s life using simple modern medicine why would you not?
    - DanBC 8y ago
      Doing the tests is one thing. Keeping the samples, and telling parents that the samples can't be destroyed, is something else. Also, do we know if this actually results in lower mortality?
      - throwahey 8y ago
        I would lean towards no. I've seen state research based on flimsier data. In this case, infant mortality which has been going down historically could be connected to anything. Perhaps carbon levels in the atmosphere were the cause.

tehgdogg 8y ago

"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 8y ago
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_University_of_California https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...
- tehgdogg 8y ago
  Thanks I appreciate the information.
- ApolloFortyNine 8y ago
  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.
bsenftner 8y ago
The USA only protects one type of citizen: the corporate citizen. Human citizens are like a 3rd world country here. Those human citizens who want better treatment own or control corporations, and gain their entitlement through them. This is the United States of America.

basicplus2 8y ago

It seems we have a similar issue in Australia... https://www.mja.com.au/journal/2011/194/6/newborn-screening-cards-legal-quagmire https://www.mja.com.au/journal/2011/194/6/newborn-screening-... 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-collections/types-human-tissue-collections https://www.alrc.gov.au/publications/19-human-tissue-collect...

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

skierscott 8y ago

> 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 8y ago
Presumably those that store the spots for between 1 and 21 years.

sonotathrowaway 8y ago

“”” "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.

stinkbug 8y ago
>if he had already taken steps to prevent it from happening, I’m betting he would’ve mentioned them specifically. It said the studies have to be approved by a review board and that the researchers have to agree to destroy or return the samples when they're done. I don't think we should cynically assume "he knows the answer is yes." He may be hedging simply because he knows it relies on the word of the researchers. But biomedical researchers have been sensitized to issues of research ethics much longer than internet/data science practitioners. There can be significant penalties for procedural violations and in my experience people do not tend to play fast and loose with the rules.
- sonotathrowaway 8y ago
  > that the researchers have to agree to destroy or return the samples when they're done. So just like Cambridge Analytica, and I assume he’s going to appear on tv with that same stupid look on his face when he feigns surprise that he ‘suggestions’ get ignored? >He may be hedging simply because he knows it relies on the word of the researchers. Yea that’s exactly my point. He is literally the person selling this information, and who is in charge. He structured the terms of sale for his benefit. I hold him responsible for the consequences of his actions, irregardless of whether or not he tries to use ignorance or negligence as his defense. Honestly, I am basing my opinion of him on his attempt to convince me that my DNA isn’t personally identifiable. That really summed up his intellectual integrity for me.

jedberg 8y ago

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.

dlg 8y ago
Would anyone here be interested in a lawsuit and/or campaign to get this changed?
- NHern031 8y ago
  Not being able to opt your child out of DNA collections seems like what could be a slippery slope to a Brave New World. What's even worse is the level of misinformation surrounding the situation. Even if the samples are held under the assumption that they will be used for research, one should be entitled to opt-in, opt-out, and know what is happening with their/their child's DNA. A lawsuit here seems reasonable if not to stop this, to atleast shed light on the situation.
  - gcb0 8y ago
    opting out of proven good health measures sound like anti-vaxer, but ensuring the state have apropriate privacy safeguards is paramont

everdev 8y ago

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

throwaway84742 8y ago

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?

oliv__ 8y ago

> 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.

ptype 8y ago

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&artikel=6487518 https://sverigesradio.se/sida/artikel.aspx?programid=2054&ar...

burntrelish1273 8y ago

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

apo 8y ago

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.aspx https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/nbsnpp.a... 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 8y ago
> 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?

mwilliaams 8y ago

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 8y ago
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 8y ago
  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 8y ago
    After the Golden State Killer episode, it’s now probably seen as cheaper for them to just contact companies like 23andme.

cobbzilla 8y ago

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 8y ago
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.

whataretensors 8y ago

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 8y ago
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 8y ago
  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.

stmfreak 8y ago

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.

apexalpha 8y ago

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.

j_says 8y ago

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)