Did anyone opt out of a Newborn Screening?

yeshuahamasshiah · July 2010

or plan to??

is it possible? (I am in IL)

It is set to be mandatory in every state (with maybe 3-4 states allowing you to 'legally' opt out) but if you are planning an out of the hospital birth, how exactly would you be forced to get one? Is it tied to the birth certificate?

I obviously have not discussed this with our Pedi yet but I was wondering what other mamas did in regards to the issue.

TIA

violetvirgo · July 2010

i'm not really sure why you'd want to opt out of the screening completely. but i had to sign a waiver to get out of the Hep B vax that the do right after birth (which is so ridiculous).

pepomntpat · July 2010

I am not sure why you would want to opt out of the screening. Opting out of medications and vaccinations off the bat I understand, but checking to make sure LO is healthy just seems like common senses.

ToledoDeux · July 2010

Why would you choose to do this?

pinksweetpea2 · July 2010

I am not sure what you mean by screening. We didn't do the Hep B or eye goop, but my MW did an exam and APGARS when she was born, took a small amout of blood a couple days later (heel prick) to send away for testing, and then I took her to get a hearing test when she was about a month old.

honkytonk_kid · July 2010

I'm not really sure why you would want to.

Like pp said I understand opting out of meds or vaccines, but the newborn screen (which, if we're referring to the same thing is checking the palate for a cleft, checking the fontanels, reflexes, patent nostrils, patent anus, intact spine, heart/lung/bowel sounds, etc) I can't think of a reason that you would refuse that.

Do you mean something else by newborn screening?

yeshuahamasshiah · July 2010

violetvirgo:
i'm not really sure why you'd want to opt out of the screening completely. but i had to sign a waiver to get out of the Hep B vax that the do right after birth (which is so ridiculous).

pepomntpat:
I am not sure why you would want to opt out of the screening. Opting out of medications and vaccinations off the bat I understand, but checking to make sure LO is healthy just seems like common senses.

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

2) Screening is a public health initiative that surveys an entire population (or sub-population) for evidence of an illness before it exhibits symptoms. The purpose of screening is to identify those among the apparently well who are suffering from (or who will likely develop) a disease and who are likely to benefit from early detection and intervention, because the screening is applied to the sick and the healthy alike, the screening should minimize the amount of false positives (which it does not). As a result, for many of the conditions that most states screen for, a large majority of the initially positive screening results will turn out to be incorrect. (This happened to us with DS and it lead to nothing but sadness and worrisomeness during the first months of his life, which turned out to be false)

3) Newborn profiling carries risks IMO. Gathering genetic information pre-symptomatically could possibly detect genetic variations in the genome which may suggest an elevated risk for a condition that never actually develops, and to initiate treatment pre-symptomatically may do the baby more harm than good.

4) There is also the danger that screening will lead to a cascade effect, in which genetic risk information of perhaps uncertain validity leads to additional tests and interventions, causing anxiety, extra costs, and even some risk of medical harm, more so if further testing reveals that the original positive result was in fact a mistake.

I can probably go on and on about why I am considering to opt out, if you are interested in pursuing your own research, you may be able to find evidence that proves the contrary or evidence that supports my findings. As with everything else, it all boils down to inform consent.

With that said, has anyone else consider these facts and how did you go about saying NO to the screening??

yeshuahamasshiah · July 2010

honkytonk_kid:
I'm not really sure why you would want to.
Like pp said I understand opting out of meds or vaccines, but the newborn screen (which, if we're referring to the same thing is checking the palate for a cleft, checking the fontanels, reflexes, patent nostrils, patent anus, intact spine, heart/lung/bowel sounds, etc) I can't think of a reason that you would refuse that.
Do you mean something else by newborn screening?

It varies from state to state. I am in IL and here is what my state panel looks like

Endocrine Disorders
	Congenital adrenal hyperplasia (CAH)
	Congenital hypothyroidism
Hemoglobinopathies
	Sickle cell disease and other sickling hemoglobinopathies
	Apha and ?eta thalassemia
Metabolic Disorders
	Biotinidase deficiency
	Cystic fibrosis (CF)
	Galactosemia
	Amino acid disorders
		Phenylketonuria (PKU) / Hyperphenylalaninemia
		Maple syrup urine disease (MSUD)
		Tyrosinemia, type 1 and possibly type 2 or type 3 - tyrosine levels may not be sufficiently elevated for detection
		Homocystinuria / Hypermethioninemia
		5-oxoprolinuria (glutathione synthetase deficiency) - may not be reliably detected in first few days of life
	Urea cycle disorders
		Citrullinemia (argininosuccinate synthetase deficiency)
		Argininosuccinic aciduria (argininosuccinate lyase deficiency)
		Argininemia - extremely rare
	Organic acid disorders
		2-methylbutyryl-CoA dehydrogenase deficiency (2MBD)
		3-methylcrotonyl-CoA carboxylase deficiency (3MCC)
		3-hydroxy-3-methylglutaric-CoA lyase deficiency (3HMG)
		3-methylglutaconic aciduria (3MGA)
		Glutaric aciduria, type 1 (GA1)
		Propionic acidemia (PA)
		Isovaleric acidemia (IVA)
		Methylmalonic acidemia (MMA)
		Malonic aciduria (MA) - may not be reliably detected in first few days of life
		Beta-ketothiolase deficiency (BKT)
		Multiple carboxylase deficiency (MCD)
	Fatty acid oxidation disorders
		Short chain acyl-CoA dehydrogenase deficiency (SCAD)
		Medium/Short chain L-3-hydroxyacyl-CoA-dehydrogenase deficiency (M/SCHAD)
		Isobutyryl-CoA dehydrogenase deficiency (IBCD)
		Medium chain acyl-CoA dehydrogenase deficiency (MCAD)
		Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD)
		Very long chain acyl-CoA dehydrogenase deficiency (VLCAD)
		Trifunctional protein deficiency (TFPD)
		Carnitine palmitoyl transferase deficiency type 2 (CPT2) - neonatal form, extremely rare
		Carnitine palmitoyl transferase deficiency type 1 (CPT1A) - may not be reliably detected in first few days of life
		Carnitine/acylcarnitine translocase deficiency (CACT) - neonatal form, extremely rare
		Carnitine uptake defect (CUD) - may not be reliably detected in first few days of life
		Multiple acyl-CoA dehydrogenase deficiency (MADD) / Glutaric aciduria, type 2 (GA2)

ToledoDeux · July 2010

I don't understand how people this paranoid get by on a day-to-day basis.

And usually people cite their C&Ped sources rather than trying to pass them off as original thoughts.

eta: as far as how you go about refusing, a tiny bit of googling revealed this:

Refusal of Newborn Screening
? Parents may refuse newborn screening only on the basis of religious beliefs and practices.
? If parents refuse newborn screening of their infant, parent education about the seriousness of newborn screening disorders should be provided, and the infant?s primary care provider should be informed about the refusal. A written objection statement should be signed by the parents and placed in the infant?s medical record, and a copy of the statement should be sent to Illinois Department of Public Health, Genetics/Newborn Screening Program.

drewiekc · July 2010

Honestly, if you have put this much effort into looking up info on why the screenings are "bad", I'd think you would have come across some information on how to opt out.

tracy41 · July 2010

I know there are factions of people who consider the gov't to be evil, but most of those diseases can result in the horrible and painful death of your child. That's why they screen for them at birth so they can be treated immediately. Maybe your pediatrician can talk to you about why the tests are done and how the records of the screening are kept. It is my personal opinion that the federal gov't is not trying to create a master race of genetically pure humans, but what do I know?

honkytonk_kid · July 2010

yeshuahamasshiah:
honkytonk_kid:
I'm not really sure why you would want to.
Like pp said I understand opting out of meds or vaccines, but the newborn screen (which, if we're referring to the same thing is checking the palate for a cleft, checking the fontanels, reflexes, patent nostrils, patent anus, intact spine, heart/lung/bowel sounds, etc) I can't think of a reason that you would refuse that.
Do you mean something else by newborn screening?

It varies from state to state. I am in IL and here is what my state panel looks like

Well, that makes slightly more sense to me than refusing the newborn physical exam, but I still would not refuse it.

I would personally rather go through the anxiety and stress of a false positive test result than even the possibility of putting my child through any of the tested, potentially devastating (but treatable) disorders.

Your reasons strike me as more alarmist and conspiratorial than welfare of your child centered. But, you know... it's your child, do what you think is best.

yeshuahamasshiah · July 2010

ToledoDeux:
I don't understand how people this paranoid get by on a day-to-day basis.

thanks for the insult, you must live a way happier life than I. Confused

ToledoDeux:
And usually people cite their C&Ped sources rather than trying to pass them off as original thoughts.

here are just a couple:

https://bioethics.georgetown.edu/pcbe/reports/newborn_screening/chapter1.html

https://www.aapsonline.org/legis/pauls1858.php

ToledoDeux:
as far as how you go about refusing, a tiny bit of googling revealed this: Refusal of Newborn Screening
? Parents may refuse newborn screening only on the basis of religious beliefs and practices.
? If parents refuse newborn screening of their infant, parent education about the seriousness of newborn screening disorders should be provided, and the infant?s primary care provider should be informed about the refusal. A written objection statement should be signed by the parents and placed in the infant?s medical record, and a copy of the statement should be sent to Illinois Department of Public Health, Genetics/Newborn Screening Program

Thanks for your finding, unfortunately I have no religious beliefs that prevent me from getting the NB screening, my reasons have been stated in my previous posts.

Mrs_Liberto · July 2010

Government conspiracy mumbo-jumbo over a heel prick and a few drops of blood that can save your child's life?

Maybe you need to go live in that bunker with the person who thinks it's annoying that the government wants to vaccinate us.

yeshuahamasshiah · July 2010

Mrs_Liberto:
Government conspiracy mumbo-jumbo over a heel prick and a few drops of blood that can save your child's life?
Maybe you need to go live in that bunker with the person who thinks it's annoying that the government wants to vaccinate us.

No thanks, I rather stay here and annoy people like you!

AshasaurusRex · July 2010

I did not opt out of the screening, and my super anti vaccine, anti big government MW did not recommend me to. I did however sign something that had them destroy the blood samples once the tests were done because if not they would have kept them in some sort of DNA bank or something like that. I could have opted out and would have had to just fill in a couple blanks and put my signature on a waver form. But then again, this is Texas and they make it pretty easy on us to be anti big government here:).

nosoup4u · July 2010

Frankly, I think it's a moot point bc you're doing a home birth. Have you asked your midwife about it? If the screening is done at your first doctor's visit for the baby, I'd imagine you can talk to them about turning it down, as informed refusal still applies?

lesleytaylor · July 2010

This is just my random thought on why your hospital/pedi/primary care dr/etc. would want to make sure that all of their bases are covered with newborn screenings or why they would make the opt out process so stringent. My husband is a Dr. (eye dr.) and i cannot tell you the number of people who opt out of having their eyes dilated for one reason or another and then they lose some vision or go blind due to eye diseases.......then they want to sue the pants off of anyone they can find......even the ones who signed waivers opting out still hire lawyers and try to sue (thank god this has never happened to my hubby but he consults with an attorney on some "eye" related cases).

If you feel that some of the tests are unecessary it is your right to opt out. Maybe you could agree to some but opt out of others.

Would I personally opt out of most of the tests.....no.........some of the vaccines right at birth....yes.

Being married to someone who is in the medical field I see the "medical" side of alot of things. My hubby and I are both very much into our natural birth plan and eating organic and living an ecofriendly life (well we are doing the best we can with being ecofriendly) so when it comes to some of the vaccines and things like that for our child I defer to my hubby and trust him 100%. Not all medical professionals are out to "make as much money as possible" and perform useless tests (although there are many that do).

Just my opinion.....good luck with your decision but also discuss with your pedi. why these tests are performed and their necessity.

yeshuahamasshiah · July 2010

lesleytaylor:
This is just my random thought on why your hospital/pedi/primary care dr/etc. would want to make sure that all of their bases are covered with newborn screenings or why they would make the opt out process so stringent. My husband is a Dr. (eye dr.) and i cannot tell you the number of people who opt out of having their eyes dilated for one reason or another and then they lose some vision or go blind due to eye diseases.......then they want to sue the pants off of anyone they can find......even the ones who signed waivers opting out still hire lawyers and try to sue (thank god this has never happened to my hubby but he consults with an attorney on some "eye" related cases).

If you feel that some of the tests are unecessary it is your right to opt out. Maybe you could agree to some but opt out of others.

Would I personally opt out of most of the tests.....no.........some of the vaccines right at birth....yes.

Being married to someone who is in the medical field I see the "medical" side of alot of things. My hubby and I are both very much into our natural birth plan and eating organic and living an ecofriendly life (well we are doing the best we can with being ecofriendly) so when it comes to some of the vaccines and things like that for our child I defer to my hubby and trust him 100%. Not all medical professionals are out to "make as much money as possible" and perform useless tests (although there are many that do).

Just my opinion.....good luck with your decision but also discuss with your pedi. why these tests are performed and their necessity.

Thanks for your advice. I too got to be directly exposed to the "medical side of things" given that my mother is an OB/GYN.

As I know that not all medical professionals are "the root of all evil", it is a completely different story once the gov't gets involved.

PDXPhotoGrl · July 2010

First of all, newborn screening is run by the state, not the federal government, so constitutional authority has absofuckinglutely nothing to do with it. See here: https://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm

The bill you cited provides for grants to fund screening program and an agency to make recommendations to the states as to which diseases to screen for, but does not require any state to do anything. Read your sources.

Second of all, they only screen for diseases that are greatly impacted by early intervention. Inborn errors of metabolism make up a large portion of those diseases, the effects of which can be devastating if not detected. Many of these can be helped immensely by special diets, which is why it is SO important to detect them BEFORE symptoms manifest, at which point neurological effects have already occurred.

False positives are always possible, but I personally find them to be a more than acceptable risk if it saves lives (or quality of life).

There's nothing wrong with questioning authority, but living in a constant state of fear and suspecting something just because government entities endorse it is ridiculous.

Unknown · July 2010

This content has been removed.

violetvirgo · July 2010

ToledoDeux:
I don't understand how people this paranoid get by on a day-to-day basis.

word. this is blowing my mind. i'm very informed on why they conduct the screening. it's hardly something significant enough for me to refuse it. for me, the benefit outweighs the "risk".

and i don't care if the government is keeping track - i'm not a conspiracy theorist.

yeshuahamasshiah · July 2010

Carabiner252:
I am going to have my baby screened. Most of the diseases are rare, but say he has galactosemia and would die eventually if I give him breastmilk. Since I plan to EBF, I want to know if he has galactosemia. Also, I eat a lot of foods with phenylalanine in them. If my baby has PKU, I want to know so I can avoid those foods. If the government wants to keep track, I'm gonna have to be okay with that. As a government employee, I so highly doubt that they have the funding or ability to keep accurate tabs on all the old newborn screenings. We can't even afford to cater events, we potluck everything. Now, if they turned it over to the private sector, that might be different.

I will most likely pick and choose what I will have my child screened for. PKU would definitely be one we do as I also plan to EBF.

As far as the gov't, sadly so, DH is finishing up a post-doctoral appointment at the USDA, so technically he is a gov't employee as well for the next few months at least.

As far as turning the information to the private sector, well the issue lies on the fact that the information should not be kept unless you as the parents are consenting to such, private or federal/state storage. If you are ok with it, then that is up to you!

.DietDrPepper. · July 2010

i don't think they actually screened my kids for anything. i think they stole their DNA and saved it to fight the zombies in 2012.

MLsBride06 · July 2010

Carabiner252:
I am going to have my baby screened. Most of the diseases are rare, but say he has galactosemia and would die eventually if I give him breastmilk. Since I plan to EBF, I want to know if he has galactosemia. Also, I eat a lot of foods with phenylalanine in them. If my baby has PKU, I want to know so I can avoid those foods. If the government wants to keep track, I'm gonna have to be okay with that. As a government employee, I so highly doubt that they have the funding or ability to keep accurate tabs on all the old newborn screenings. We can't even afford to cater events, we potluck everything. Now, if they turned it over to the private sector, that might be different.

Exactly! OP, your reasons against it are politically driven and selfish.

femmeftle9 · July 2010

yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

violetvirgo · July 2010

actually....i remember you. i can't believe i didn't remember. this crazy is just the cherry on top for you, my dear.

too bad they can't do a finger prick screening for racist nutter. i hope you got your chicken quesadilla.

https://community.thebump.com/cs/ks/forums/thread/37205393.aspx

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know. LOL. Makes no sense.

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know, that

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know,

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know, that paragraph

makes

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know,

that

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know, that paragraph

Mjmksb04 · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

I know, that paragraph

makes

Jackswife123 · July 2010

One word: Quesadilla.

ToledoDeux · July 2010

violetvirgo:
actually....i remember you. i can't believe i didn't remember. this crazy is just the cherry on top for you, my dear.
too bad they can't do a finger prick screening for racist nutter. i hope you got your chicken quesadilla.
https://community.thebump.com/cs/ks/forums/thread/37205393.aspx

lol. She wanted STEAK, violet, STEAK!!!!!!!!

drewiekc · July 2010

Ah! The chicken quesadilla incident! I totally forgot about that.

preg_amy · July 2010

violetvirgo:
actually....i remember you. i can't believe i didn't remember. this crazy is just the cherry on top for you, my dear.
too bad they can't do a finger prick screening for racist nutter. i hope you got your chicken quesadilla.
https://community.thebump.com/cs/ks/forums/thread/37205393.aspx

Ready2006 · July 2010

Jackswife123:
One word: Quesadilla.

I had one for lunch, actually, and it was DELISH.

The rest of this post, I want to understand, but I have a really hard time doing so. I just can't endorse opting out of harmless screenings. False positive results for any of the screens listed would lead to further testing-- a risk I'd willingly accept in order to be sure that my child gets the earliest and best treatment possible if anything is actually found.

vegetarian_chica · July 2010

drewiekc:
Ah! The chicken quesadilla incident! I totally forgot about that.

I forgot too. Waiting for a big DD.

yeshuahamasshiah · July 2010

femmeftle9:
yeshuahamasshiah:

There are several reasons why I would rather opt out:

1) The federal government lacks both the constitutional authority and the competence to develop a newborn screening program adequate for a nation as large and diverse as the Untied States. The bill which sets this screening into law (S. 1858) violates the Constitution, and may have untended consequences that will weaken the American health care system and further erode medical privacy. (i.e. you can read into what happened in Texas and how a DNA bank had been kept with blood samples of newborns without the parents consent or knowledge) .

Can you please build on this? I know you C&P'ed this, BUT HOW does the newborn screening violate the US Constitution? Inquiring minds want to know... (waves political science degree).

Kthnxbai!

S. 1858 violates Art.1, Section 9, Clause 7. "No money shall be drawn from the Treasury, but in Consequence of Appropriations made by Law..." Congress did not make law requiring DNA samples of newborns. Public money is being given to the institutions which collect the samples, yet no legislation has been created or been voted on.

The paragraph you quoted from me came from here: https://www.aapsonline.org/legis/pauls1858.php

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