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.