As it should. So far, data collection rarely benefits the people the data are collected from. DNA is akin to collecting contact lists of others to create a shadow profile of unknown persons from known ones. No opt-out is possible.
> Phenylketonuria (PKU). PKU is an inherited disease in which the body cannot metabolize a protein called phenylalanine. It is estimated that one in every 10,000 to 15,000 babies is born with PKU in the U.S. Without treatment, PKU can cause intellectual disability. Newborn screening for PKU is required in all 50 states.
IIRC, babies with that condition need to be put on a special formula ASAP, or they'll have problems.
> So far, data collection rarely benefits the people the data are collected from.
That may be true, but it's lazy and incorrect to assume that it's correct to proceed like it never benefits anyone.
From experience with immediate family in the US, hospitals can be quite scary currently. Reasons range from staff that doesn’t communicate to surgeries that are counter-indicated and scheduled without patient knowledge. Then there is the whole opaque billing process where you learn that the minor medication (like Advil) costs hundreds of dollars after the fact. Personally, a hospital is the last place I want to end up right now.
Hospitals are businesses optimizing for their bottom line, not for patient benefit. Law-enforcement has a lot of funding. Sharing data (obtained from humans without a fully developed consciousness) with law enforcement (for whatever purposes they want) is a massive overreach and has nothing to do with providing care for the patient. So, their best interest is not your best interest, but we should trust them implicitly?
Unfortunately, it doesn't matter. Most of my family has submitted samples to those ancestry sites, including my parents. So I'm basically in there whether I want to or not.
There are diseases (particularly cancer) that can be detected before symptoms arise based on the changes in the methylation of the DNA present in cells in the plasma.
To detect these, you need to have a baseline - the longer the better.
> Further, while some participants’ samples have been assayed with a broad array of tests (Tables 2–4), participant samples will be stored for in depth testing at a later time when current assays are pertinent or new assays are available or new understanding of a disease process make performing a standard assay, not originally done, to be done on all or a sub-group of participants because of this new knowledge.
Because its useful to have these data from a scientific perspective. Say for example you have leukemia later in life. A researcher wants to study what it is about your leukemia that makes it different from the rest of your blood. You can't solve that problem by drawing blood from the patient today, all the blood will be contaminated with leukemia. You could try and get DNA from the fingernails, but these are liable to be of poor quality and damaged by environmental factors that fingernails tend to be exposed to. Likewise for most other blood free sources of DNA you could take from a living person.
Now, if you had a blood sample from before the patient had leukemia, that would be invaluable data. You can yield high fidelity genetic material without much blood sample. Because of this, most states have laws saying this newborn screening material is available for various research purposes. The parent or the individual may also request their newborn sample, should new screening methods come out in the future that may not be on that panel when you were born for example.
> Say for example you have leukemia later in life. A researcher wants to study what it is about your leukemia that makes it different from the rest of your blood.
That could still be done if the data/samples were anonymized and the ID were only given to the patient. For general research, anonymized would also work perfectly fine.
It is anonymized when its used for research purposes, but you still would want to have some key to match it up to the patient should they have more information to add down the road. Say the patient took some drug for their leukemia and had remission, that is valuable metadata to include along with the raw sequence data in a database.
Because government cares about government rules only when it suits them. The rest of the time they make up excuses for why something should be allowed.
Because the people often mis-citing HIPAA also know so little about it they don't even know what it stands for.
People think it is a magical incarnation, that they can wield in any vaguely relevant discussion.
Whereas I'd argue that HIPAA is a very weak law with poor enforcement. It is a "better than nothing" law and nothing more[0]. It isn't some kind of medical data super weapon like people believe.
This is a gray area for sure, but I'd argue that it violates the [HITECH Act][^1] Part D (privacy & disclosure). The rub here is that the patient, newborn in this case, did not consent because they were underage. In many cases this blood sample is taken "by default" and requires an opt-out due to religious objection.
To be honest, I am not sure HIPAA exists anymore in any way but name these days. In the advent of apps, that information flows way too freely. Case in point, Alex Jones' lawyer was able to obtain medical history of the defendants.
That said, it may be time to actually demand some basic protections in that sphere.
> Case in point, Alex Jones' lawyer was able to obtain medical history of the defendants.
Do you mean plaintiffs not defendants? My understanding is Alex Jones was being sued, not doing the suing.
I'm not aware of the details of that case, but could those records be something his lawyer legitimately demanded during discovery? My understanding is that HIPAA only controls the disclosure of medical records by the medical provider and related parties, and I'd be surprised if there wasn't a carve out for court orders. If the records leave the provider's custody for any reason, HIPAA is irrelevant for any dissemination after that point.
You are right about the defendant part; somehow it didn't translate in my head as I was typing.
As for the second part, maybe? Unfortunately, that part is very much unclear with everyone having a reason to spin it to their advantage. I could not find the actual origin at this time. Maybe we will be able to learn it eventually.
Since search warrants were issued, rather than healthcare data volunteered by healthcare providers, HIPAA doesn't apply at all.
> Covered entities may disclose protected health information to law enforcement officials for law enforcement purposes as required by law (including court orders, court-ordered warrants, subpoenas) and administrative requests; or to identify or locate a suspect, a fugitive, a material witness, or a missing person.
The article says nothing about a warrant being issued for the babies DNA, only that it was issued for the father's DNA after the babies DNA indicated the father was the likely suspect.
For DNA from the adult suspects. Earlier in the article it says that:
> police in California had issued five search warrants to access such samples, and that at least one cold case there was solved with the help of newborn blood.
Then goes on to reference the cold case. So I assume they somehow got a warrant for this DNA even though they couldn't from an adult suspect which is odd.
This was New Jersey not California. It said police asked the lab. A warrant isn't asking. And what would be the probable cause? So I think the lab gave it to police without a warrant.
So before all of this, a crime would happen, you'd leave a fingerprint, the police attempt to match it with a fingerprint in their databases that you might have had to submit to get a drivers license. All fine because people understand the science of fingerprinting.
Today, a crime would happen, you leave DNA, the police attempt to match it with a DNA sample in their databases you might have submitted for a health screening. 4th amendment violation because DNA is scary to the lay person it seems. This is not from logical reasoning but from emotional reasoning, because for all intents and purposes DNA databases are being used exactly like fingerprint databases that are normalized in our society today, and shouldn't actually have this scrutiny (or maybe fingerprints should have more scrutiny if you are against DNA screening for crimes, because the logical arguments would be the same). Then again these articles generate clicks while I'm sure most would eyeroll a fingerprinting article.
But its not being argued on that angle, its being argued on a 4th amendment angle. If it were being argued on that angle, why not also scrutinize the state fingerprinting labs on that same argument? They don't get that scrutiny though. It's just mainly a fear of DNA technology owing to privacy concerns, not really due to concerns that the sample could be crosscontaminated or that the labs aren't qualified to perform the work. Neither were mentioned in the article anyhow, just the 4th amendment angle.
Sure, that wasn't mentioned in the article because it's not specific to DNA tests, but all tests.
The difference with DNA is that the genetic data has a ton of info associated with it, and that in this case it was collected for healthcare purposes. Fingerprints don't carry sensitive health data. The arguments are different.
The health data is not being used for criminology purposes. Only the pattern of the DNA so yes its like using the pattern of your fingerprint or even your iris or other sources of unique biologically identifiable material you have on your person.
I looked into this a bit some time ago, and fingerprint matching is significantly more error-prone and "fuzzy" than DNA matching. In that sense the argument against fingerprint databases is, IMHO, a lot of better than that against DNA databases.
There are some other differences too though: you're much more in control over where you leave your fingerprints than where you leave your DNA and fingerprints are not connected to your relatives. Not leaving any traces of your DNA is essentially almost impossible.
What concerns me that is people might be hesitant to do this blood screening for their newborns if they were ever involved in a crime, even a minor one, which would negatively impact their (innocent) newborns. With fingerprints you can be reasonably sure you didn't leave them with pretty basic precautions, and you don't need to fear your children's fingerprints fingering you in the first place. With DNA that's quite different.
So I'm not so sure the trade-off is worth it here, except for some of the most serious crimes.
Appeals to ignorance or bad intentions are not good arguments to do away with a good system that simultaneously leads to improved public health and rapists in jail IMO. If people are avoiding it and its leading to poorer outcomes for those newborns with criminal parents, then all the more reason to make this sort of screening mandatory, much like how its a good idea to mandate vaccinations even if it steps on the toes of the poorly informed in the process.
I don't think it's an "appeal or ignorance" at all. Furthermore, the story has an example of DNA from a rapekit being used to solve a years-old burglary. That doesn't strike as a good trade-off to me.
The parents may no longer be criminals; they may have done a few stupid things when they were 18 or whatnot. Not excusing it, but also don't need to go above and beyond any lengths to solve these comparatively minor crimes: literally no one is served by that: not the victims of the crime, not society, and certainly not their children. In more serious crimes, it may be worth the trade-off – that I why I used the qualifier "except for some of the most serious crimes".
> make this sort of screening mandatory, much like how its a good idea to mandate vaccinations even if it steps on the toes of the poorly informed in the process.
It's not realistic this will be enacted any time soon, if ever, and any proposal needs to take this political reality in to account.
Police can't figure out your parent's fingerprint from looking at your fingerprint. Only 4 states collect fingerprints from driver's licenses; California does so only to do a background check for certain kinds of vehicle industry occupational licensing.
Also applying for a license means you are at or approaching the age of majority. Either you are applying for a license knowing that you once did a crime, or you're doing a crime knowing you once submitted a fingerprint for a license. That's very different from having your blood sampled as a newborn, and most people assume their health information had privacy protection.
Apples and oranges are both fruits, but they're not interchangeable.
DNA can be used to verify a suspect, it is not really valid to compare a crime scene sample to a national database because you WILL get a match with high probability even if the perp is not in the database. DNA is not a unique identifier, at least no the way its used.
In this case it sounds like they used it for verification, since the sought a comparison of a suspect with a specific baby's DNA. From a science perspective this seems quite reasonable. From a privacy PoV IDK.
In the way that it's used, DNA is as close to a unique identifier as you can get. There are many techniques. https://en.wikipedia.org/wiki/DNA_profiling
You can tune the stringency but they shouldn't be causing enough false positives that screening will just turn up random people. More likely to get close relatives of people in the room at some point. See "partial matching" on the linked page.
It's very much logical reasoning, and it's not about DNA being scary.
It's about a kind of perfidy. It's the reason you in war don't masquerade as someone who is wounded and to try to get at your enemy, and don't use fake medical stuff in ruses, &c (this of course happened once in Pakistan, but I count it as those responsible lacking in understanding and being short-sighted).
You don't ever do anything that will in any way affect people's trust in the medical system, even indirectly. This has been understood for a long time, and is part of the reason why the Hippocratic oath (i.e. the actual Hippocratic oath) involves swearing to never do any harm.
> the police attempt to match it with a DNA sample in their databases you might have submitted for a health screening.
I know you were attempting to draw a parallel, but the difference is that the DMV is a government organization (part of the DOT), and your medical provider is not. There are different expectations of privacy. Which is close to the heart of the issue.
Your medical provider provides plenty of information to the state at their behest as it is. Chances are that started with your birth when your birth certificate was made official. Sensitive medical information is not being used to solve crimes here, they aren't looking for people with certain conditions etc. They are asking if a sample matches another sample in a database and to what proportion they are in agreement. That's it.
Law enforcement is using Third Party Doctrine and usage of non LE DNA databases to work around the requirement for probable cause. As I understand it, public health regulations are exacerbating the availability of this data by mandating submittal of DNA for screening, and retaining the data.
There is also the CSI effect to take into account and once again, the bloody fact we don't need to be preserving this data in perpetuity.
This is why Third Party Doctrine is a complete and total deconstruction of the 4th Amendment in practice.
It would be a huge scientific loss to discard collected genetic material. We should be cataloging all DNA that we can, not just from humans but from crops we grow and ecological marker species that proxy ecosystem health. You never know if there will be some test uncovered in the future that you could use against these previously collected samples and make some life saving inferences. When you throw that data away, you've eliminated that possibility forever and damned future scientists.
If you collect my DNA you're getting a whole lot more information about me than you would from a fingerprint. I guess it depends on how the DNA is stored. If it's an opaque hash, then I probably agree with you.
I'd hate to become a suspect in a crime because of some profile worked up by a behavioral analyst at the FBI and something in my DNA suggests I could fit the profile.
Well, that's not how its really used per say. They aren't looking for behavioral features, they are looking for pattern matches not unlike a fingerprint. The advantage of this versus a fingerprint is the heritability aspect. You share half your DNA with either parent and you can proportionally estimate degree of shared dna for relatives in a geneology. That means they don't have to make sure the killer is in the finger print database, a distant relative and some math can in practice expand your database.
I might be on board if you could make the stronger claim that they can’t look for behavioral features nor will they be able to in the future. A good hash provides that guarantee.
The argument is that they aren't considering phenotype information when they are solving crimes. How would that information even be used? A lawyer would have a stronger argument arguing a predisposition to criminality on environmental factors: a broken home, being raised when leaded gas was used, etc, versus arguing in terms of genetic association. These studies are not very robust connecting behavior and genetics because environment is a huge factor that explains the observed variances in these phenotypes.
That being said, these data are being used for actually legally actionable things: first order pattern recognition using the same legal frameworks as fingerprints. Not second order "what do these patterns actually do in the body" or third order "what do these functions in the body do for the individual", each of which would probably take a PhD project to work out.
The DNA tests are done for what are known as "Short Tandem Repeats". These are spots in the DNA where the same sequence (2-6 base pairs) is repeated several times. Unrelated people have different numbers of repeats.
They're looking at a dozen or more locations. The number of repeats at any location is unrelated to the number of repeats at another location.
So, if you've got a number between 2 and 10 or 20, you've got 10% to 5% of the population that has that particular number of repeats. 1/(0.1 ^ 13) is 10 trillion which is the ballpark for the number of variations for STRs possible on a 13 location test.
The data that is stored looks like [6 4 12 16 2 15 19 18 14 5 3 7 8]
Is there a genetic component to being a skilled and/or safe driver?
Society as a whole would probably be a lot better off if we stopped pretending driving around 4,000-lb hunks of metal at 80mph/130kph was some sort of inalienable right and actually showed some discretion in who was allowed to do it and who wasn't. But it's not realistic, especially if you live outside of a city.
Well the government is not doing that in this case. They don't care about phenotypes for this analysis. The phenotypes are used for other analysis like public health efforts, but for law enforcement they just ask whether one pattern matches another and to what proportion it matches, and then if it matches a psuedorelative they go about to see if there is infact a person who could be this psuedorelative, then they go about and see if the person did commit the crime with other pieces of evidence.
There are two issues here. First, you constantly leave DNA everywhere. You are literally shedding it, even when you are not committing a crime. It is _guaranteed_ that DNA of innocent people ends up at crime scenes. While it is certainly useful at _confirming_ a suspect, it is way less powerful when trying to _find_ a suspect.
Second, DNA matching is a matter of chance. While comparing a sample to a single potential match is extremely reliable, comparing a sample to a population is not. You're basically running into a birthday paradox here: given a large enough dataset, false matches are guaranteed to happen.
If you use biometrics databases like this, you basically end up reverting the burden of proof: your DNA was at the crime scene, can you explain how it got there if you are indeed innocent?
It's not exactly a birthday paradox because you have way more than 365 potential variants. Some 324 million. Plus its not discrete variants like having a single date of birth, you can have multiple combinations of variants.
But broadly the big utility is in matching distant relatives versus strangers from the lot, and seeing if there is agreement with those putative matches with actual records and other hard evidence. You share half your DNA with either parent, 1/8 with your first cousin, and so on and so fourth for the rest of the human race. Using that information coupled with other pieces of evidence can yield a pretty reliable hit and is how they managed to catch the Golden State killer using DNA and genealogy.
Does everything you just said not also apply to fingerprints? You leave them everywhere you touch, and people touch a lot of things. Maybe less so than DNA, since it's effectively a subset (things you touch likely have DNA from your hand skin, but things you don't touch might also have DNA from other things), but it's still just saying "you were likely here". And given a large enough population, wouldn't there also be many partial fingerprint matches?
I'm not sure how these two things are issues when comparing fingerprinting to DNA matching. They seem to be applicable to both.
Given the surprisingly poor perfection of dna "matching" and the tendency for public and law-court rhetoric to seriously misrepresent the odds of a mistake... at this point anyone who would voluntarily submit dna - or anything other than fight very hard against handing it over - has grotesquely poor judgement.
Can you site a source documenting this poor perfection of DNA matching? I dug into this after reading your comment and I found the opposite was true, that a false positive as an odds on the rate of 1 in 1 billion. When you couple it with the fact you also need more than just DNA evidence to convict (which was done with the golden state killer, DNA was not the only source of evidence), the odds grow even smaller of 1) you having no alibi or potentially being at the place of the crime at the time and more evidence, and 2) you being that 1 in 1 billion match to the real killer.
pop article and still too forgiving, but this is not a bad start: https://freakonomics.com/2008/08/are-the-fbis-probabilities-... (it's still excessively charitable about the odds because the genetic factors are not really perfectly independent and even a tiny bit of interdependence wreaks havoc with large probability calculations)
The link you cite with "1 in billions" odds is exactly the sort of misrepresentation I'm talking about. Combine smaller-than-pretended probabilities with big database trawling and it becomes a bit like the "birthday problem": it provides really good odds of finding someone to pin the crime on, but very little confidence that it was really them.
The birthday problem is different because there are 365 possibilities and every individual can only have 1 out of 365 states. For DNA there are over 300 million variants in the human genome and you can have different combinations of these variants. As far as matching 9 of 13 loci, thats not surprising to me nor concerning. If you left a sample at a crime scene it would match all 13 loci. Today the FBI uses at least 20 loci.
On top of that, merely being a dna match does not mean you are going to jail. You need corroborating evidence just like how finger prints are used. The odds of a false positive that 1) is a dna match and 2) was in the right place at the right time and lacks and alibi and has a potential motive for the crime must be a trillion to one.
Birthday problem analogy comes up when trawling databases, not in single matches. Even in single matches you need to be careful not to apply the maths of combining independent probabilities on things that aren't really independent. As soon as someone starts quoting one-in-billions it is reasonable to fear that they might be trying to pull the "prosecutor's fallacy". Was the article I linked helpful?
They probably were not informed of the uses. The nurse probably told them they're using it to screen for defects. I guarantee they made no mention of the retention nor law enforcement uses.
If I buy a knife at the local shop then I don't explicitly consent to sharing purchase data with law enforcement either. But I don't think it's especially controversial that law enforcement nonetheless obtains this data with the appropriate warrant and such in the process of solving a crime.
One of the issues in this case is that police did not have a warrant at the time they obtained the baby's DNA sample. They were unable to get one because they did not have probable cause that any individual had committed the crime. And certainly the baby could not have committed the crime, which occurred before it was born.
It was only after the state lab gave them the baby's DNA sample that they were able to establish probable cause and get a warrant for the father.
The nurse probably handed them a form written by the state that outlined all of this. California puts this in 4 easy to read pages which includes mention of law enforcement uses:
And it emphasizes confidentiality and says it's hard and rare for law enforcement to get access to this information. People are going to imagine it only applies in cases like their child being kidnapped or murdered.
Per the article, state polices on sample retention and access are wildly inconsistent. I really don't think a form that outlines a complex topic handed to people right after they've had a baby delivered is adequate notice that cops might treat it as evidence years or even decades later.
I think it does given the golden state killer story made global headlines. That being said it is still rare that this data are used, and the document covers that you can always destroy your samples.
They consented to that data being collected by the hospital, and shared with anyone who needs access to private health data for the purposes of medical examination or treatment. If they consented to the data being shared, they were probably not informed of the possibility it could be shared to law enforcement.
Informed consent is the bar, if personal liberty ranks anywhere on your list of human rights.
They are informed it can be shared with law enforcement potentially though. If they weren't informed, you are right this would be a bigger case in the courts but its not because they are informed of these uses.
Babies cannot consent to anything, including blood screenings which, according to the article, "have been highly successful at reducing death and disability among children".
It is a cornerstone of modern civilization (with its construction of private property rights) that private data vis a vis health be, in the ideal, entirely divorced from demands made by governments or sanctioned actors thereof.
DNA and other factors available in blood would seem to fall under "individually identifiable health information" by any definition: a blood sample confers the most unambiguous identification of a biological organism.
Do blood samples nonetheless fall under "permitted disclosures"? Why? It goes completely against the stated purpose of laws like HIPAA re: PII to transmit DNA or other identification data.
There are questions as to whether finger prints are unique (https://psmag.com/news/why-fingerprints-arent-proof-47079) so DNA seems better. I am a little conflicted on what I actually think. On the one hand typical police methodology is frightfully subjective and error prone. Having methods that can be validated independently from gov't labs seems more just. On the other hand I can see this having unintended consequences.
"Police had found no exact match between DNA found at the crime scenes and any of the profiles in California's DNA profile database, so they searched the database for stored profiles that demonstrated sufficient similarity to allow police to infer a familial relationship. They found similar DNA belonging to Franklin's son, Christopher, who had been convicted of a felony weapons charge in 2008. Christopher was too young to have committed the murders, but the familial DNA match led investigators to look at his father, Lonnie, as the likely perpetrator."
its a little fraught, because some states take DNA from those who have committed crimes..
You're all reacting to the wrong part of this. The blood sample part is unimportant, they could have just dug in the garbage and gotten a dirty diaper or whatever. They sent the blood off for DNA typing, which they could have done on any other thing that kid had touched instead. Follow him to McDonalds, collect the straw from his juicebox when it gets thrown away, end result is the same, and no warrant is needed for that either.
This bothered me a lot, so I contacted the department of health and requested the opt-out form. They emailed me back rather quickly with the form, but boy does the text of the form try to dissuade you!
"I understand that there are numerous benefits to public health in retaining residual NBS samples. Residual NBS samples are the only available opportunity for a complete population study to be conducted since there is a sample received on virtually every baby born. In addition to this, the NBS sample is sometimes the only remaining evidence available to the family from their child if their child becomes missing. The main benefits to NBS sample storage are:
• Quality assurance and improvement for the NBS laboratory.
• Research for new technologies and for detecting new disorders.
• Research for new treatments and cures for major childhood diseases.
• Population incidence research on disorders and environmental contaminant exposures.
• Parents can recall the specimens to help determine the cause of an unexplained death of their child (SIDS).
• Parents can recall the specimens to aid law enforcement in identifying their missing child. "
109 comments
[ 2.8 ms ] story [ 176 ms ] thread> As it should.
Not in this case. These screenings detect serious diseases, and skipping them will have serious health consequences for many people:
https://www.chop.edu/conditions-diseases/newborn-screening-t...: here's just one of the things they test for:
> Phenylketonuria (PKU). PKU is an inherited disease in which the body cannot metabolize a protein called phenylalanine. It is estimated that one in every 10,000 to 15,000 babies is born with PKU in the U.S. Without treatment, PKU can cause intellectual disability. Newborn screening for PKU is required in all 50 states.
IIRC, babies with that condition need to be put on a special formula ASAP, or they'll have problems.
> So far, data collection rarely benefits the people the data are collected from.
That may be true, but it's lazy and incorrect to assume that it's correct to proceed like it never benefits anyone.
What the heck is that supposed to mean?
Hospitals are businesses optimizing for their bottom line, not for patient benefit. Law-enforcement has a lot of funding. Sharing data (obtained from humans without a fully developed consciousness) with law enforcement (for whatever purposes they want) is a massive overreach and has nothing to do with providing care for the patient. So, their best interest is not your best interest, but we should trust them implicitly?
Why are these DNS sample stored for so long? The U.S. really needs some data protection and privacy laws.
Conservatives will support it because law and order.
It's the perfect storm of governmental invasiveness.
To detect these, you need to have a baseline - the longer the better.
For one such study, The Project Baseline Health Study: a step towards a broader mission to map human health --- https://www.nature.com/articles/s41746-020-0290-y
> Further, while some participants’ samples have been assayed with a broad array of tests (Tables 2–4), participant samples will be stored for in depth testing at a later time when current assays are pertinent or new assays are available or new understanding of a disease process make performing a standard assay, not originally done, to be done on all or a sub-group of participants because of this new knowledge.
https://www.stanfordchildrens.org/en/topic/default?id=cord-b...
Edit: about half way through the article, it appears to be a sample from newborn screening, but another thing to think about.
Now, if you had a blood sample from before the patient had leukemia, that would be invaluable data. You can yield high fidelity genetic material without much blood sample. Because of this, most states have laws saying this newborn screening material is available for various research purposes. The parent or the individual may also request their newborn sample, should new screening methods come out in the future that may not be on that panel when you were born for example.
https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20...
That could still be done if the data/samples were anonymized and the ID were only given to the patient. For general research, anonymized would also work perfectly fine.
People think it is a magical incarnation, that they can wield in any vaguely relevant discussion.
Whereas I'd argue that HIPAA is a very weak law with poor enforcement. It is a "better than nothing" law and nothing more[0]. It isn't some kind of medical data super weapon like people believe.
[0] https://en.wikipedia.org/wiki/Health_Insurance_Portability_a...
[^1]: https://en.wikipedia.org/wiki/Health_Information_Technology_...
That said, it may be time to actually demand some basic protections in that sphere.
Do you mean plaintiffs not defendants? My understanding is Alex Jones was being sued, not doing the suing.
I'm not aware of the details of that case, but could those records be something his lawyer legitimately demanded during discovery? My understanding is that HIPAA only controls the disclosure of medical records by the medical provider and related parties, and I'd be surprised if there wasn't a carve out for court orders. If the records leave the provider's custody for any reason, HIPAA is irrelevant for any dissemination after that point.
As for the second part, maybe? Unfortunately, that part is very much unclear with everyone having a reason to spin it to their advantage. I could not find the actual origin at this time. Maybe we will be able to learn it eventually.
Since search warrants were issued, rather than healthcare data volunteered by healthcare providers, HIPAA doesn't apply at all.
> Covered entities may disclose protected health information to law enforcement officials for law enforcement purposes as required by law (including court orders, court-ordered warrants, subpoenas) and administrative requests; or to identify or locate a suspect, a fugitive, a material witness, or a missing person.
> police in California had issued five search warrants to access such samples, and that at least one cold case there was solved with the help of newborn blood.
Then goes on to reference the cold case. So I assume they somehow got a warrant for this DNA even though they couldn't from an adult suspect which is odd.
Today, a crime would happen, you leave DNA, the police attempt to match it with a DNA sample in their databases you might have submitted for a health screening. 4th amendment violation because DNA is scary to the lay person it seems. This is not from logical reasoning but from emotional reasoning, because for all intents and purposes DNA databases are being used exactly like fingerprint databases that are normalized in our society today, and shouldn't actually have this scrutiny (or maybe fingerprints should have more scrutiny if you are against DNA screening for crimes, because the logical arguments would be the same). Then again these articles generate clicks while I'm sure most would eyeroll a fingerprinting article.
The difference with DNA is that the genetic data has a ton of info associated with it, and that in this case it was collected for healthcare purposes. Fingerprints don't carry sensitive health data. The arguments are different.
There are some other differences too though: you're much more in control over where you leave your fingerprints than where you leave your DNA and fingerprints are not connected to your relatives. Not leaving any traces of your DNA is essentially almost impossible.
What concerns me that is people might be hesitant to do this blood screening for their newborns if they were ever involved in a crime, even a minor one, which would negatively impact their (innocent) newborns. With fingerprints you can be reasonably sure you didn't leave them with pretty basic precautions, and you don't need to fear your children's fingerprints fingering you in the first place. With DNA that's quite different.
So I'm not so sure the trade-off is worth it here, except for some of the most serious crimes.
The parents may no longer be criminals; they may have done a few stupid things when they were 18 or whatnot. Not excusing it, but also don't need to go above and beyond any lengths to solve these comparatively minor crimes: literally no one is served by that: not the victims of the crime, not society, and certainly not their children. In more serious crimes, it may be worth the trade-off – that I why I used the qualifier "except for some of the most serious crimes".
> make this sort of screening mandatory, much like how its a good idea to mandate vaccinations even if it steps on the toes of the poorly informed in the process.
It's not realistic this will be enacted any time soon, if ever, and any proposal needs to take this political reality in to account.
Also applying for a license means you are at or approaching the age of majority. Either you are applying for a license knowing that you once did a crime, or you're doing a crime knowing you once submitted a fingerprint for a license. That's very different from having your blood sampled as a newborn, and most people assume their health information had privacy protection.
Apples and oranges are both fruits, but they're not interchangeable.
In this case it sounds like they used it for verification, since the sought a comparison of a suspect with a specific baby's DNA. From a science perspective this seems quite reasonable. From a privacy PoV IDK.
Where is this required? Because I've never heard of such a thing in the US.
It's about a kind of perfidy. It's the reason you in war don't masquerade as someone who is wounded and to try to get at your enemy, and don't use fake medical stuff in ruses, &c (this of course happened once in Pakistan, but I count it as those responsible lacking in understanding and being short-sighted).
You don't ever do anything that will in any way affect people's trust in the medical system, even indirectly. This has been understood for a long time, and is part of the reason why the Hippocratic oath (i.e. the actual Hippocratic oath) involves swearing to never do any harm.
I know you were attempting to draw a parallel, but the difference is that the DMV is a government organization (part of the DOT), and your medical provider is not. There are different expectations of privacy. Which is close to the heart of the issue.
There is also the CSI effect to take into account and once again, the bloody fact we don't need to be preserving this data in perpetuity.
This is why Third Party Doctrine is a complete and total deconstruction of the 4th Amendment in practice.
I'd hate to become a suspect in a crime because of some profile worked up by a behavioral analyst at the FBI and something in my DNA suggests I could fit the profile.
I might be on board if you could make the stronger claim that they can’t look for behavioral features nor will they be able to in the future. A good hash provides that guarantee.
That being said, these data are being used for actually legally actionable things: first order pattern recognition using the same legal frameworks as fingerprints. Not second order "what do these patterns actually do in the body" or third order "what do these functions in the body do for the individual", each of which would probably take a PhD project to work out.
They're looking at a dozen or more locations. The number of repeats at any location is unrelated to the number of repeats at another location.
So, if you've got a number between 2 and 10 or 20, you've got 10% to 5% of the population that has that particular number of repeats. 1/(0.1 ^ 13) is 10 trillion which is the ballpark for the number of variations for STRs possible on a 13 location test.
The data that is stored looks like [6 4 12 16 2 15 19 18 14 5 3 7 8]
https://en.wikipedia.org/wiki/Microsatellite
https://en.wikipedia.org/wiki/STR_analysis
There's probably a curve where it gets scary again as you know more about it.
DNA isn't just identification. It is a lot more than just a unique identifier, it is a whole history and a lot of future probabilities.
My list of SNPs is a lot less "if you have nothing to hide" about it.
Imagine a government which looks at SCN1/SCN2 before issuing a drivers license.
Society as a whole would probably be a lot better off if we stopped pretending driving around 4,000-lb hunks of metal at 80mph/130kph was some sort of inalienable right and actually showed some discretion in who was allowed to do it and who wasn't. But it's not realistic, especially if you live outside of a city.
Second, DNA matching is a matter of chance. While comparing a sample to a single potential match is extremely reliable, comparing a sample to a population is not. You're basically running into a birthday paradox here: given a large enough dataset, false matches are guaranteed to happen.
If you use biometrics databases like this, you basically end up reverting the burden of proof: your DNA was at the crime scene, can you explain how it got there if you are indeed innocent?
But broadly the big utility is in matching distant relatives versus strangers from the lot, and seeing if there is agreement with those putative matches with actual records and other hard evidence. You share half your DNA with either parent, 1/8 with your first cousin, and so on and so fourth for the rest of the human race. Using that information coupled with other pieces of evidence can yield a pretty reliable hit and is how they managed to catch the Golden State killer using DNA and genealogy.
I'm not sure how these two things are issues when comparing fingerprinting to DNA matching. They seem to be applicable to both.
https://www.parliament.uk/documents/post/postpn258.pdf
The link you cite with "1 in billions" odds is exactly the sort of misrepresentation I'm talking about. Combine smaller-than-pretended probabilities with big database trawling and it becomes a bit like the "birthday problem": it provides really good odds of finding someone to pin the crime on, but very little confidence that it was really them.
On top of that, merely being a dna match does not mean you are going to jail. You need corroborating evidence just like how finger prints are used. The odds of a false positive that 1) is a dna match and 2) was in the right place at the right time and lacks and alibi and has a potential motive for the crime must be a trillion to one.
It was only after the state lab gave them the baby's DNA sample that they were able to establish probable cause and get a warrant for the father.
https://www.cdph.ca.gov/Programs/CFH/DGDS/CDPH%20Document%20...
Per the article, state polices on sample retention and access are wildly inconsistent. I really don't think a form that outlines a complex topic handed to people right after they've had a baby delivered is adequate notice that cops might treat it as evidence years or even decades later.
Informed consent is the bar, if personal liberty ranks anywhere on your list of human rights.
DNA and other factors available in blood would seem to fall under "individually identifiable health information" by any definition: a blood sample confers the most unambiguous identification of a biological organism.
Do blood samples nonetheless fall under "permitted disclosures"? Why? It goes completely against the stated purpose of laws like HIPAA re: PII to transmit DNA or other identification data.
But I was really commenting that private data is certainly somethign the government can obtain and use against you in court.
https://texaslawreview.org/americas-hidden-national-dna-data...
(See the paragraph around cite 180)
https://en.wikipedia.org/wiki/Frederick_Bieber#National_and_...
Family Search first used in California in 2010. The "Grim Sleeper" serial murderer. They first tried in 2008 but no match. Trying again 2010 yeilded a result. https://en.wikipedia.org/wiki/Grim_Sleeper#Arrest_and_furthe...
"Police had found no exact match between DNA found at the crime scenes and any of the profiles in California's DNA profile database, so they searched the database for stored profiles that demonstrated sufficient similarity to allow police to infer a familial relationship. They found similar DNA belonging to Franklin's son, Christopher, who had been convicted of a felony weapons charge in 2008. Christopher was too young to have committed the murders, but the familial DNA match led investigators to look at his father, Lonnie, as the likely perpetrator."
its a little fraught, because some states take DNA from those who have committed crimes..
It will make the world much safer as the chances of getting away with a crime are heavily reduced.
There's still due process and the presumption of innocence.
"I understand that there are numerous benefits to public health in retaining residual NBS samples. Residual NBS samples are the only available opportunity for a complete population study to be conducted since there is a sample received on virtually every baby born. In addition to this, the NBS sample is sometimes the only remaining evidence available to the family from their child if their child becomes missing. The main benefits to NBS sample storage are: • Quality assurance and improvement for the NBS laboratory. • Research for new technologies and for detecting new disorders. • Research for new treatments and cures for major childhood diseases. • Population incidence research on disorders and environmental contaminant exposures. • Parents can recall the specimens to help determine the cause of an unexplained death of their child (SIDS). • Parents can recall the specimens to aid law enforcement in identifying their missing child. "