What they don't tell you about genetic testing

nuttybunch · April 2009

After your baby is born, the hospital will do a heel prick on your baby to take a few drops of blood. They then test for a bunch of genetic diseases and disorders that can possibly detect diseases in time to get them treated--before they cause harm to your baby.

I kind of get that. I want my baby to be healthy. But what they don't tell you is that the government keeps these records on file. Your baby's DNA sample is then the property of the government and they can use it for whatever purposes they want. Apparently HIPPA doesn't prevent the hospital from sharing the information with other health-related institutions, either.

In MN, we have the option to opt out of testing or to require the test results to be destroyed. DH and I have opted NOT to have the testing done at all. We don't want the government to have our baby's DNA!!!

MN lawmakers are trying to make this process mandatory--parents can't opt out. Our governor said he intends to veto any such bill that crosses his desk, which is great! If the bill were to pass, anything detected in your system (i.e. arthritis markers--because this affects my family) would be noted and insurance companies could potentially consider this a 'pre-existing condition' and decide not to insure you for arthritis related treatment. That's a crock!!!

So, ladies, look at your state's dept of health website to find out more about genetic testing on babies. Maybe you can opt out. Maybe you want the screenings but don't want them to store the data. Whatever the case may be, you'll want to be informed BEFORE you go to the hospital.

McLovinfromHawaii · April 2009

Interesting!

kant08 · April 2009

Why don't you just have them destroyed if you have the choice?? ?Newborn screenings often include testing for PREVENTABLE metabolic disorders that cause some serious developmental delays or even death if not identified. ?I would never put my child at risk like this.?

Mrs.Carlybella · April 2009

i find this very interesting- do you have a source for all of this info? and i agree- in a nonargumentative way- why wouldn't you do the destroy option?

nuttybunch · April 2009

kant08:
Why don't you just have them destroyed if you have the choice?? Newborn screenings often include testing for PREVENTABLE metabolic disorders that cause some serious developmental delays or even death if not identified. I would never put my child at risk like this.

Normally with something like this, I would do just that--have them destroyed. But they have been doing this testing for years and years without informing the parents of such tests. That's pretty sneaky, I think. Not telling the parents they're taking your baby's blood and storing the results.

Because they've been so sneaky thus far, I don't really trust them to destroy the results. I don't want to put my baby at risk, so I'm kind of torn, but I think the safest thing is to not do the testing. DH agrees.

MegDC · April 2009

They don't store indentfying information like your name, SSN, etc. ?Public health officials collect data about genetic diseases and disorders in order to track them in the general population, identify increases in disease in certain areas, etc. ?They are not storing your child's name and DNA sample in a big scary database. ?State governments can barely figure out who is on their own payroll-- they don't work like this.

Genetic testing is really really important and can identify problems that need immediate treatment. ?Please talk to your pediatricians about this before you make decisions.?

nuttybunch · April 2009

Mrs.Carlybella:
i find this very interesting- do you have a source for all of this info? and i agree- in a nonargumentative way- why wouldn't you do the destroy option?

I have the one for MN. https://www.cchconline.org/ You'll probably have to Google your own state.

Choco80 · April 2009

I agree with previous posters - do you have a hard source to cite for all of this? ?While I'm sure parts of it are true, some of it sounds a little conspiracy theory to me - no offense, you sound like a smart person, I just find the whole "the government keeps records of your DNA" point to sound really out there without some substantive proof of this. ?The government can barely keep track of anything these days . . .

Choco80 · April 2009

While this website has some helpful info, it's the website of a private 501(c)(3) nonprofit - essentially an interest group, and much of what they say about the issue is based on the testimonials of a small number of people. ?I'm not saying that they are liars out to pursue an agenda, but I personally, I need something more concrete than this - like actual legislation/regulations or a primary source that talks about this practice, or even a hospital website.

iluvabrit · April 2009

health depts keep medical records of us all the time... how do you think they track births, cancer rates, obesity, etc.

not done with identifying info as the pp said.

beside, nationally there is a law preventing genetic discrimination and disclosure.

seriously, time to take off the tin foil hat. it's not a big conspiracy.

renebean319 · April 2009

birdie_1010 · April 2009

MegDC:

They don't store indentfying information like your name, SSN, etc. Public health officials collect data about genetic diseases and disorders in order to track them in the general population, identify increases in disease in certain areas, etc. They are not storing your child's name and DNA sample in a big scary database. State governments can barely figure out who is on their own payroll-- they don't work like this.

Genetic testing is really really important and can identify problems that need immediate treatment. Please talk to your pediatricians about this before you make decisions.

...this

nuttybunch · April 2009

Choco80:
While this website has some helpful info, it's the website of a private 501(c)(3) nonprofit - essentially an interest group, and much of what they say about the issue is based on the testimonials of a small number of people. I'm not saying that they are liars out to pursue an agenda, but I personally, I need something more concrete than this - like actual legislation/regulations or a primary source that talks about this practice, or even a hospital website.

Here's another, more credible website. it's the state's website.

https://www.health.state.mn.us/newbornscreening/

This one says, "Yes we do it, but it's necessary."

nuttybunch · April 2009

I'm not saying don't have your baby screened. Go for it. I definitely see the benefits. I'm usually not a conspiracy theorist. I just question how much I can trust the gov't on this issue if they haven't even told parents they were doing it for SO LONG.

Having your baby screened is probably a great thing. This was just meant to bring it to your attention that they store the results, and if you don't like the thought of your baby's DNA being out there, look into having it destroyed.

Totally didn't mean for this to sound like a 'don't have your baby tested' kind of thing. Just something to look into--how does your state or your hospital treat the information once they gather it?

Happy researching!

mpls_cat · April 2009

All the government needs to get a DNA sample from you is a cheek sample or a drop of blood. Pretty sure if there were some freaky conspiracy out there where they were doing evil things with out DNA they could get samples on anyone and everyone they wanted. Infant DNA testing is a true success of public health and has prevented many babies from getting preventable diseases (see PKU for a great example). Please stop scaring people out of doing something very important with your paranoia and complete lack of research!

Temp159135562506975 · April 2009

MegDC:

They don't store indentfying information like your name, SSN, etc. Public health officials collect data about genetic diseases and disorders in order to track them in the general population, identify increases in disease in certain areas, etc. They are not storing your child's name and DNA sample in a big scary database. State governments can barely figure out who is on their own payroll-- they don't work like this.

Genetic testing is really really important and can identify problems that need immediate treatment. Please talk to your pediatricians about this before you make decisions.

thank you voice of reason!

I just love conspiracy groups and their propaganda.

Even if it were true- I'd happily let the gonv't have my son's DNA if it means he gets tested for things that I can prevent/cure/help him with as he grows.

When you have a baby where I deliver they give you all the testing info in your pre-registration packet - it's no big secret - they don't secretly wisk away your baby to prick their heel.... it is all very transparent. NJ is one of the states that actually does more standard tests than most states- and I'm glad about that.

and lol re: tin foil hat love it!

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