Did you know that your personal freedom to make choices with your baby has been avoided, possibly -on purpose?
This is about the New Born Screening ~ aka ~ PKU.
I personally think this test is important to do. With that said, over the past I have known parents who refused to have this newborn blood work done. Although the states say that this test is mandatory, I personally feel that all parents have the right to say NO to anything, including tests or medical attention that others try to mandate onto them for their child. It is our right to refuse things even if others think they should have it done.
I personally think this test is important to do. With that said, over the past I have known parents who refused to have this newborn blood work done. Although the states say that this test is mandatory, I personally feel that all parents have the right to say NO to anything, including tests or medical attention that others try to mandate onto them for their child. It is our right to refuse things even if others think they should have it done.
Well one concerned parent I know-chose not to have this test done, and shared with me why. I have to admit prior to this, I really did not research why they were not having it done. Their reason amazed me.
First- lets go back a few years -about 3-4 years ago. (about the year of 2005). While at a state midwifery conference, I attended a session done by the New Born Screening lab. It was informative, explained about the tests that were done. Then they sent around photo copies of samples of the blood work that had been sent to them- over the past 5 or so years.
When you do a PKU (newborn screening) test, you fill the circles which are about the size of a dime to a nickel --with the babies blood. It is a special paper, that the test is done on.
So, the blood is put on this paper, it is absorbed thru the paper and you will see the blood on the front and back completely filling the circles. You are to do this in one big blood drop for each circle.
The test is painful to the baby, because any poke in the skin is painful- but a person trained well can have enough blood for the whole test--in less than a minute or two-thus not putting the baby thru too much trauma.
The test is painful to the baby, because any poke in the skin is painful- but a person trained well can have enough blood for the whole test--in less than a minute or two-thus not putting the baby thru too much trauma.
For these samples -some people have a problem getting enough blood, or not getting enough blood fast enough, it may be the device they are using to prick the heel or their skill level.(often it is their skill level). Most of the time the state lab will not accept that test card if the spots are not filled, and require you to re-test.
So during this class, they passed around photocopies of some of the circles that have been filled -thru the years --not very well. This was to show us bad examples vs good examples. It showed over spotted, spots that were overlaid, under filled etc... One had a small amount of blood in the center of each circle about the size of a small hole punch. They called it
~*"the lucky one"*~.
Well, I always remembered that. The "lucky" one.
They explained they had just enough blood to do the test. I wondered then -what did they do with the rest of the blood? Why did we have to fill 5 larger circles if that small amount was enough?
Fast forward to the client who shared the information with me. Wow! I had no idea. The government was saving the 'leftover' blood, saving your babies DNA and using it for what? They were (at that time) not telling the parents this and what they were doing with it.
I am not against the actual PKU/New Born Screening test, actually the opposite---I really believe that it is a good thing to do, it is the most inexpensive test that you will ever have done (average of about $1.00-2.00 a test). The disorders are very important to identify if your child has any of them--- but lying to parents about what they do with the leftover blood samples is NOT acceptable.
There is a chart where you can see what your state does. Indiana saves the blood for 23 years, while Michigan saves it Indefinitely. (per this chart)
"This nationwide collection of newborn DNA has been called a "national treasure"by Sharon Terry of the Genetic Alliance and referred to at the December 2009 forum as a "scientific goldmine" by Amy Gaviglio, a genetic counselor at the Minnesota Department of Health.
Increasingly, state health departments have begun to store newborn blood spots (Baby DNA) and newborn genetic test results and claim them as state government property. The test results are placed in a state laboratory database (genetic registry) and the blood spots are warehoused in the state health department or elsewhere by contract."
Hundreds of dried blood samples have been turned over to the federal government to build a database of DNA. This is all without parents consent.
So, for all of you parents who want to know that your choices are honored about your child, there is more to this DNA saving than what you know...more than what is even told here or the links I have in this blog-
Some people and groups are fighting this...in the courts. (UPDATE: they won and now parents get to choose what is done with their childs left over blood).
Some people and groups are fighting this...in the courts. (UPDATE: they won and now parents get to choose what is done with their childs left over blood).
UPDATE: The state of Michigan and Indiana now requires the parents to sign an informed consent form--giving permission for the state to use the 'extra' blood after the newborn screening test is done for research. Good job Michigan and Indiana for giving informed consent!
As I said above, I am not against the New Born Screening test, in fact I think its a wonderful test and I encourage all of my clients to have this done and I offer to do the test for families. (they only have to pay for the card, I do my part for free). So far 99% of my clients do this test/screening.
I have had parents whose babies have been identified with a disorder, and if they had not been diagnosed early, perhaps would have died. That is scary! They had no idea they had that genetic disorder in their family.
Which ever you choose to do-- test or not--you are to be given full informed consent and make your choice accordingly. Here is a link about the tests that are done with the NBS. You can click on each test and then another page opens up that explains the test-what it is, what it causes and other information. It is a good link. (click here)
Parents, continue to do your own research on everything. You have the internet now, (I did not when my children were born) so use it, research, read, ask questions. Its your child, you have to fully understand things offered in order to make decisions that are right for you and your family.
Remember, with the tests done for NBS, there are NO signs or symptoms that you 'see' or notice, until often, it is too late-if your baby has a disorder. So I do encourage the testing to be done.
But read and learn. What the states use to do, they are not doing now, and it is all because you -the families- across America spoke up and complained. That was the right thing to do. BUT please have the test done! Now you get to sign on the back of the card if your baby's left over blood us saved and used or not. Informed consent!
http://www.cchconline.org/pr/pr240610.php
http://www.cchconline.org/pdf/S_1858_NBS-DNAWarehouseFINAL.pdf
http://www.cchconline.org/pdf/NBS_EUGENICS_REPORT_Apr2009_FINAL.pdf
http://www.cchconline.org/pdf/50_States-Newborn_Blood_Retention_Policies_FINAL.pdf
http://www.cchconline.org/issues/Warehousing_Baby_DNA.php
http://www.texastribune.org/texas-state-agencies/department-of-state-health-services/dshs-turned-over-hundreds-of-dna-samples-to-feds/
http://www.cchconline.org/pr/pr022410.php
http://www.cchconline.org/issues/NewbornGeneticTestingMN.php
http://www.genomicslawreport.com/index.php/2010/02/02/newborn-blood-spot-litigation-70-days-to-destroy-5-million-samples/
http://parental-rights.suite101.com/article.cfm/newborn-blood-samples-subject-of-litigation
http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=3826
http://www.bioethics.iu.edu/body.cfm?id=133
