That isn't really fair for the poor people of this state, who are more likely to experience disease and need the help the most. Should we pay private companies to do the tests for everyone.. that is just what we do.
As noted, the objection is storing the sample, or the data, I don't know.
So have you sample destroyed, stop donating blood, etc.
Blood and tissue is big business, this is just a 'scary' government agency that doesn't really profit for it, it is a great headline but a terrible representation of reality.
Sorry, was being pretty stupid last night.
We, are unfortunately obligated by the state legislature to try, of course you can opt out of screening.
And no, you don't need a lawyer to not hand over a blood sample, though we don't do and DNA tests and as I've noted the DNA isn't good enough for forensics (at this point, I am sure someone would note). It is no different than handing over a blood sample when you go to a doctor's office.
As others have noted you can have your sample destroyed as well so it doesn't get used for research.
Avoiding testing however is akin to an antivaxxer position and it is rather frustrating to deal with. Apologies.
We still want a sample because we are mandated by law to screen every baby.
You can avoid this by refusing to have your child participate in the medical and legal systems... we won't mind.. less work.
You can also refuse vaccines. But why the hell would you do either of these things ?
You can have your sample destroyed so any real objection is pretty flimsy.
Well, you could give your blood sample out now if you wanted to give it to researchers.
It is also not public domain. I can't just look up your health data or check our your blood sample. Hell, we don't sequence your DNA and there is a good chance we couldn't even find the vital records by the end of the month if we tried. Old samples are effectively lost in a huge pile of paperwork secured by red tape.
We also can't be releasing enough information to identify you (intentionally) that would be a HIPPA violation (thanks privacy training, I thought I clicked past everything).
So.. unless you were born with a super rare disease (where you might not even be able to give consent or are already dead), then your sample will probably be untouched as the huge halls of paper records that nobody cares about.
There are 500,000 babies a year, and frankly you are all just numbers on a spread sheet that get condensed down to aggregate statistics on a report that gets robo-signed through management in a process that somehow saves lives of a small percentage of people afflicted with unfortunate metabolic disorders.
My great grand-daddy might have an objection to my misusin' my DNA's then.
You don't generate this information, the process of analysis generates the information.
It's very key..
Actually they sell this to places like the red cross who extract it for cord blood which they then sell to organizations like the CDPH-GDSP-GDL at tremendous markup (no really, the price of innocent blood is not cheap, and we are not allowed to import it from China).
Nothing about no clones in the freezer, forget about it.
The samples sent for researchers have their identity information removed. We watch researchers like vultures and it is incredibly boring to do. If you request destruction after they were sent out, we cannot do anything about that.
Yes! Though we get a pretty good STR set for babies.. the potential argument of DNA, nuclease and blood donor contamination pretty much rule out forensic application of these samples. I do the human identity testing for the CA Genetic Disease Screening Lab.
Yes, they are contracted to medical labs that do all sorts of other testing of patient samples throughout California. We loose money by doing it this way but it is better than funding a bunch of local state labs to do the same thing and maintain a 24 hour turnover time for results necessary to prevent your baby from being handicapped because someone gave him a peanut butter snack.
No, they cannot legally sell the raw data, the contractor labs are explicitly forbidden from doing this. Also the data isn't particularly any more useful than any other medical data, perhaps less so because they are 99.9% the same as every other newborn.
Perkin-Elmer profits immensely.
Blood spots sent to research have been removed of all identifying information. Blood spots in our storage are still paired with their accession reference number.
Law enforcement can request them through a lengthy process for identifying missing persons. I work at this agency, I am going to be commenting all night.
It is certainly linked to your parents. But it cannot be used beyond a reasonable doubt for forensics. The samples will be too old and there isn't a good mechanism for the DoJ to request samples. They are used ideally for identifying remains of missing persons, I don't deal with that though.
For reference I do the human identity testing of the samples (to test in case of a mix up). The DOJ lab is across town (Richmond, CA) and they have a tremendous backlog of those swabs.
We do not test people who are not residents of California. I have one sample from outside our program and we still don't know what to do with it since there is no data attached and we have no authority to destroy it.
It is considered a standard part of every birth actually so it is just like authorizing the doctor to make sure you don't bleed to death and your child is infused with blood should they need it (and many do).
Most states have this program so that is the justification for it being a standard part of giving birth. It is an opt out program because most people would not believe they need testing (genetic diseases are by definition rare), however the consequences are so damn severe for anyone with a disease that we want to do it. It is just like vaccination.
Yes, your doctor at birth gets all these records, and it pretty much only applies to genetic diseases.
Pre-disposition is a key word for racial demographics.
Oh god, yes it is cold in those freezers, but it doesn't have to be that cold for these samples.
The dried blood spot on filter paper is really robust, samples have survived since the sixties, look up Guthrie samples if you are interested.
As you said though, they are not literally alongside.. we also have a brand new storage facility and it took teams of six lab techs two years to move everything from one place to the other.
I don't know it all personally -- though morbidly one of the most common names is 'Baby Boy'.
We have a full record of each birth that is linked to each sample by accession number. It lists mostly the parents' contact information, doctor, sample custody information, and birth related information including the screening test results. It is fairly standard for a medical record and contains pretty much just what is needed to do a job.
Access to the records is limited to people who need access, and activity on the database is recorded so they would quickly identify if someone were scraping data. That last bit is because I tried to pull a large section of gestational ages (no names or anything) without proper clearance, it wasn't pretty.
1) Sure, that would be great, I know nothing about the editing process so I will just post up links in this comment, thanks for dealing with it.
Main Page: http://www.cdph.ca.gov/program...
2) I know there is some way to look up your information, it is generally only easily accessible within 5 years of birth. Frankly, getting records for most of the readers here would be an annoying process on our end since those old records are somewhere outside of the central system (I've looked for my own).
3a) Opt-out, if you are giving birth you can opt out, but I would note that the benefits of this testing are really immense, the diseases screened for will cause mental and physical handicap. I would say opting out of this is like opting out of vaccinations.
3b) I don't know about data or sample control. I do know that there is an involved process for researchers to get samples (and they do not get anything identifying). The samples cannot effectively be used by law enforcement for purposes of human identification forensics, they are instead used for trying to identify the remains of missing people. No other agencies care about our info, though there is a ton of interesting data inside it that can be mined.
It is really strange to be sitting around as a typical gov't employee reading./ and finding my very own job mentioned.
So yeah, we have all your blood, if you were born sometime around or after the mid eighties. We get roughly 500,000 samples a year, and the blood was until recently stored alongside Safeway's inventory at a local freezer facility.
We also have to special order baby blood for our reference samples, we have the best catalogs.
Now if you have any questions about this place, ask me, if I don't know, I can ask someone else. I am quitting for my Ph'D at the end of the year so you've got my time./ as a thanks for giving me so much to read over the last six years.
Slashdot Mirror
That isn't really fair for the poor people of this state, who are more likely to experience disease and need the help the most. Should we pay private companies to do the tests for everyone.. that is just what we do. As noted, the objection is storing the sample, or the data, I don't know.
We use phenotypic screening. We don't have the sort of time or money to look at people's DNA directly. Otherwise, you are pretty much right.
So have you sample destroyed, stop donating blood, etc. Blood and tissue is big business, this is just a 'scary' government agency that doesn't really profit for it, it is a great headline but a terrible representation of reality.
Sorry, was being pretty stupid last night. We, are unfortunately obligated by the state legislature to try, of course you can opt out of screening. And no, you don't need a lawyer to not hand over a blood sample, though we don't do and DNA tests and as I've noted the DNA isn't good enough for forensics (at this point, I am sure someone would note). It is no different than handing over a blood sample when you go to a doctor's office. As others have noted you can have your sample destroyed as well so it doesn't get used for research. Avoiding testing however is akin to an antivaxxer position and it is rather frustrating to deal with. Apologies.
We still want a sample because we are mandated by law to screen every baby. You can avoid this by refusing to have your child participate in the medical and legal systems... we won't mind.. less work.
You can also refuse vaccines. But why the hell would you do either of these things ? You can have your sample destroyed so any real objection is pretty flimsy.
Well, you could give your blood sample out now if you wanted to give it to researchers. It is also not public domain. I can't just look up your health data or check our your blood sample. Hell, we don't sequence your DNA and there is a good chance we couldn't even find the vital records by the end of the month if we tried. Old samples are effectively lost in a huge pile of paperwork secured by red tape. We also can't be releasing enough information to identify you (intentionally) that would be a HIPPA violation (thanks privacy training, I thought I clicked past everything). So.. unless you were born with a super rare disease (where you might not even be able to give consent or are already dead), then your sample will probably be untouched as the huge halls of paper records that nobody cares about. There are 500,000 babies a year, and frankly you are all just numbers on a spread sheet that get condensed down to aggregate statistics on a report that gets robo-signed through management in a process that somehow saves lives of a small percentage of people afflicted with unfortunate metabolic disorders.
My great grand-daddy might have an objection to my misusin' my DNA's then. You don't generate this information, the process of analysis generates the information.
It's very key.. Actually they sell this to places like the red cross who extract it for cord blood which they then sell to organizations like the CDPH-GDSP-GDL at tremendous markup (no really, the price of innocent blood is not cheap, and we are not allowed to import it from China). Nothing about no clones in the freezer, forget about it.
Most states have a screening program, but yeah, good on you for opting out. Did you also opt out of vaccinations while you were at it?
Do you think we are really 'that' competent at planting evidence. We fuck it up all the time.. I mean.. I just do lab work nothing to see here.
The samples sent for researchers have their identity information removed. We watch researchers like vultures and it is incredibly boring to do. If you request destruction after they were sent out, we cannot do anything about that.
Yes! Though we get a pretty good STR set for babies.. the potential argument of DNA, nuclease and blood donor contamination pretty much rule out forensic application of these samples. I do the human identity testing for the CA Genetic Disease Screening Lab.
Yes, they are contracted to medical labs that do all sorts of other testing of patient samples throughout California. We loose money by doing it this way but it is better than funding a bunch of local state labs to do the same thing and maintain a 24 hour turnover time for results necessary to prevent your baby from being handicapped because someone gave him a peanut butter snack. No, they cannot legally sell the raw data, the contractor labs are explicitly forbidden from doing this. Also the data isn't particularly any more useful than any other medical data, perhaps less so because they are 99.9% the same as every other newborn. Perkin-Elmer profits immensely.
Blood spots sent to research have been removed of all identifying information. Blood spots in our storage are still paired with their accession reference number. Law enforcement can request them through a lengthy process for identifying missing persons. I work at this agency, I am going to be commenting all night.
It is certainly linked to your parents. But it cannot be used beyond a reasonable doubt for forensics. The samples will be too old and there isn't a good mechanism for the DoJ to request samples. They are used ideally for identifying remains of missing persons, I don't deal with that though. For reference I do the human identity testing of the samples (to test in case of a mix up). The DOJ lab is across town (Richmond, CA) and they have a tremendous backlog of those swabs.
We do not test people who are not residents of California. I have one sample from outside our program and we still don't know what to do with it since there is no data attached and we have no authority to destroy it.
It is considered a standard part of every birth actually so it is just like authorizing the doctor to make sure you don't bleed to death and your child is infused with blood should they need it (and many do). Most states have this program so that is the justification for it being a standard part of giving birth. It is an opt out program because most people would not believe they need testing (genetic diseases are by definition rare), however the consequences are so damn severe for anyone with a disease that we want to do it. It is just like vaccination.
Sadly, your parents consented in some form or fashion while you lacked agency on account of not being born at the time.
Yes, your doctor at birth gets all these records, and it pretty much only applies to genetic diseases. Pre-disposition is a key word for racial demographics.
Oh god, yes it is cold in those freezers, but it doesn't have to be that cold for these samples. The dried blood spot on filter paper is really robust, samples have survived since the sixties, look up Guthrie samples if you are interested. As you said though, they are not literally alongside.. we also have a brand new storage facility and it took teams of six lab techs two years to move everything from one place to the other.
I don't know it all personally -- though morbidly one of the most common names is 'Baby Boy'. We have a full record of each birth that is linked to each sample by accession number. It lists mostly the parents' contact information, doctor, sample custody information, and birth related information including the screening test results. It is fairly standard for a medical record and contains pretty much just what is needed to do a job. Access to the records is limited to people who need access, and activity on the database is recorded so they would quickly identify if someone were scraping data. That last bit is because I tried to pull a large section of gestational ages (no names or anything) without proper clearance, it wasn't pretty.
1) Sure, that would be great, I know nothing about the editing process so I will just post up links in this comment, thanks for dealing with it. Main Page: http://www.cdph.ca.gov/program... 2) I know there is some way to look up your information, it is generally only easily accessible within 5 years of birth. Frankly, getting records for most of the readers here would be an annoying process on our end since those old records are somewhere outside of the central system (I've looked for my own). 3a) Opt-out, if you are giving birth you can opt out, but I would note that the benefits of this testing are really immense, the diseases screened for will cause mental and physical handicap. I would say opting out of this is like opting out of vaccinations. 3b) I don't know about data or sample control. I do know that there is an involved process for researchers to get samples (and they do not get anything identifying). The samples cannot effectively be used by law enforcement for purposes of human identification forensics, they are instead used for trying to identify the remains of missing people. No other agencies care about our info, though there is a ton of interesting data inside it that can be mined.
It is really strange to be sitting around as a typical gov't employee reading ./ and finding my very own job mentioned.
So yeah, we have all your blood, if you were born sometime around or after the mid eighties. We get roughly 500,000 samples a year, and the blood was until recently stored alongside Safeway's inventory at a local freezer facility.
We also have to special order baby blood for our reference samples, we have the best catalogs.
Now if you have any questions about this place, ask me, if I don't know, I can ask someone else. I am quitting for my Ph'D at the end of the year so you've got my time ./ as a thanks for giving me so much to read over the last six years.