Newborn DNA Collection Services: Where is the "Informed Consent"?
Newborn Screening or as some may call it.. " Genetic Testing" began as state-level pilot programs in the 1960’s with testing for PKU, a rare genetic condition that is easily treatable if caught early enough. Rapid adoption of newborn screening among all states in the United States led to Federal-level funding in addition to expanding the number of conditions and diseases tested for. Since the testing is mandated by the government, it's often done without the parents' consent and all 50 states currently collect as well as test blood samples from newborns. Over the years, many new tests/studies have been added to the list as well. Now, states mandate that newborns be screened for anywhere between 28 and 54 different conditions.
Many parents may not be aware that right after their newborn is born, within 48 hours the baby’s heel is pricked at the hospital, the 6 collected blood samples are sent to the state lab for newborn genetic screening and this could result in the samples being stored for as little as 2 months to an indefinite amount of time, depending on the state that the birth took place. Most parents are not even aware that these samples are being taken even though they pay for the testing, much less the fact that their child’s DNA could be stored indefinitely. There is one thing that became clear while researching this, all states show a lack of concern with supplying information like this to the parents! Most do not realize that they have “consented” to the storage of DNA collected and fail to understand the actual state government and not the hospital is to receive said samples.
To make it worse some specimens are also given to outside researchers, and the information sent with the samples just might include the baby’s names. According to one study done by the state of Minnesota, over 20 scientific papers have been published in the US alone since 2000 using these samples and the researchers do not have to have parental consent to obtain these samples.
In California has samples dating as far back as 1982 and parents are supposed to get a full 14 page pamphlet twice, once before their due date and again in the hospital before the heel prick test. California is one of seven states that release samples for research without parental consent and one of four that charge a fee for their release. The state Department of Public Health collected $71,000 in processing fees and approved six research requests in the current fiscal year. San Francisco’s KPIX 5 conducted a poll of parents with kids born in the last 5 years. The majority knew about the testing but three-quarters stated that they did not know the blood samples where stored and two-thirds were not sure that they were supposed to get any of the screening information. 6 of the moms were asked to bring in all the paperwork that they received from the hospital. Only 1 out of the 6 had the actual pamphlet and she admitted to not having a chance to look at it. 1 of the moms had a tri-fold hand-out that informed of the testing but had no information about storage or opt-out options but did include a web link for more information. That means that all 6 did not get to see this information that was taken directly from the pamphlet on page :
Each state has their own statute/rule for genetic testing, you can view yours by looking here. To find out how long your state hold’s newborn samples look here. The list is from 2002 to 2016. So, if you are 36 years old or younger your DNA could be stored somewhere, could have been used as a part of research. How do you feel about this? We really would like to hear your thoughts, comments and/or concerns about this matter below. As always thank you for taking your time to read our article. If you like to view more of our work, please visit our steemit page @truthbeyondlies or check out our website T.B.L
I know it's science but why does it sound so scary? It's like something's gonna happen in the future with those collected DNA
You know I wonder about this myself. I understand the process but it does not sit well with me that it is stored. States that keep it indefinably really make me wonder why.
I'm 36 in a couple of days and my mum was only talking about the heel prick test that was done on me when I was a baby the other day, only because my new born has had his done.
My thoughts about the heel prick on myself are like this.
if the heel prick was to find or catch something to do with me they did a very bad job of it as I have been ill most of my life and they didn't seem to know about it then or now.
My kids had heel pricks when they were born and I didn't want them to have it but was told it was a must.
I am in the UK so do you think that the same applys over here as it does over your way?
Yes it does. Here is a link on page 49 it says that they store it for 5 years...
I don't know about the U.K. But I do know here (the States) they act like many things are a must but in reality (legally) they are not. Like vaccines for example (not arguing their efficacy or whether anyone should take them just using them as an example). The way they talk about them you'd think it were mandated, and the strongly suggest them. But in reality (depending on where you are at, they're cracking down on this in some states) it is not legally required. What's it like on the U.K. With vaccines and the like?
It's a must I believe, I might be wrong. but in the doctors there is signs up saying even if your kids have missed them they still have time to get them done.
They tell us its to cover them for certain illnesses but in fairness the illnesses they do say they are for are common to kill children if they did catch them.
My oldest didn't have the R out of the MMR jab, but my other 2 have had it done. but my oldest had German measles at the time of the jabs so that might have been why.
I was watching a documentry some time ago saying certain places in the world they live in small jungle villages and they never catch any of these and they live longer and healthier than what we do, It's only when the western man comes along and enters their camp is when they have problems.
Dear @truthbeyondlies, Thanks for your excellent description of this special case. As a medical researcher, I agree with @gvincentjosephm, There is a concern about the inappropriate use of these samples in the future. In my opinion, these samples may be a good source of Bioterrorism. But overall, I always look at the positive aspect of it, finding new treatment ways for diseases which are not curable.
I am Beginner in steemit and wanna follow and upvote you to use your interesting content.
...by the way, Thank you for comprehensive information about this case.
Thank you! The fact that you are a medical researcher and said what you did truly means a lot. I could not agree with you more... I worry about what they are doing with the DNA...especially the states that keep it indefinitely. I do understand that research is vital, but I believe that the parents should have the choice to allow the sample to use or if it should be destroyed. Welcome to steemit! I can honestly say this is one of the best platforms for finding like minded people!
in general, I agree with what you say.
thank you
It is our pleasure (not sure if you know that TBL is a team)
great truth article you have to create awareness with the puebra to check and eliminate doubts about the genetic status and health of the newborn, in Venezuela it is practically obligatory to give the baby the test of the heel puncture, of course that means that everyone performs your children is a matter of desicion of the parents but of conscience this test is very important.
No doubt that the testing that is done is important, some of these test have saved lives. In my opinion there is no reason for them to keep the samples after the test have been ran. If for some reason they need to re-test, they should arrange that with the parents. Our DNA is just that... ours no government should have access to it like they do.
You are right here it happens the same do not return the sample. The correct thing would be to return the sample to the parents. So what do they do? Take our kids from guinea pigs.
That is a really good idea. They run the needed test and give the card back to the parent... I just really have a problem knowing that they have these samples. I understand that they claim they only use them for research, however the government does lie. I keep asking myself what if they make a clone with one of these samples?
Exactly, it should be voluntary. They have no right to make assumptions or make calls for us. Sadly they think they own our DNA and I mean that literally. Left a link up top. Though I'm sure most of us know all about it.
No they have no right to do what they are doing, but yet they still do it. At this point I am unsure if people just don't care or do not understand what is wrong with this.
I think the biggest thing is that too care is too much work. Once you admit that you care, you don't feel right about yourself for not doing anything. And once you admit oh know, there's no going back. You can't un know that stuff. It eats at you. So it's easier to pretend it doesn't exist and do your best to forget. And luckily for them, they've been trained exactly how to do that for 12 year in government endocrination camps called schools. So they have all the right skills to do just that.
Now who is opening the can of worms (12 years of school) lol? You do bring up another good point...caring. For me, I cannot help but to care. I am a very compassionate person but I have learned that sometimes the only thing that I can do is let others know that this is what is going on. Personally I cannot pretend that something is not happening.
I hate the fact that, the government treats it's citizens as bodies. Due to genetically modifying the food - they have disturbed the whole nature. Hearing kids allergic to peanuts milk etcetera is grown marginally over the period of years. The honey US imports is totally subsidised. All of it comes from china. The thing is they know everything, they control everything and we can do nothing about it. It's all about Power and money.
#lifes don't matter to them.
It is about Money and Power to them and I agree with you it does feel like people lives do not matter to them as well. The world we live in today has changed so much since I was a child. I know that growing up I seen real clouds and had real grass feed beef... Today the clouds are effects of the chem-trails they put in our sky and the beef well I do not even want to get started on that.
And you forgot to mention the WATER ! That too is chemical . God knows what are they feeding us , through food , Media , Air .. we see what they show us . We believe what they want us to believe in. Well that's conversation is endless . God bless us all till we live .
Good point... they do put a lot into our water and when we question why something is added to it we are handed a load of BS. With so many people finally seeing what they are doing, one could start to hope that something might change and change for the better... again we can only hope.
I feel there should be a law against such acts huw the government. If nothing the parents should be adequately informed about the DNA testing on their children and should be given a choice. These children are not lab rat they are humans. I believe Some form of restrictions should be put in place.
100% agree with you. In my opinion the parents should be informed and should have total "say-so" over the samples. It should be the parents choice to allow the samples to be used in research or if it gets destroyed. It is also my opinion that they should only be allowed to run the test once, if for some reason they need to re-test for something. The parents should be notified and a new sample taken (and again NOT STORED).
Yes I totally agree and there should be a monitoring system in place for non compliance. This has been going on since the 90s and nobody picked up the issue. It's sad
Right! This should be explained in detail to the parents before birth. There is so much going on during the birth and after the baby is born. Handing the parents a pamphlet is not enough... Also parents should know the pros and cons to all of this and what all their options are.
True. Thanks for sharing and I hope someone stands up and create a change. Thank you for your time Sir its a pleasure. Nice chatting with you.
If more people banned together a change might be possible. It has been my pleasure chatting with you, but Sir is my partner, I am a lady ^^ (TBL is a team).
Thank you for the information,nice article..
You are welcome. We are glad you enjoyed it.
El ADN siempre ha sido algo bueno pero muy aterrador y nervioso, así me han dicho.
The fact that technology has advanced enough for test to be ran on newborn DNA to detect something that could kill a baby is great and wonderful. The test that they perform does save lives and that is a blessing. The fact that they hold on to the DNA and do not let the parents know is disturbing and scary. They claim they hold on to in case they have to test again and for research, but the government has lied before about their intentions so that is worrisome.
I hate going to the doctor for any reason. Unfortunately, that is not possible. It is not a conspiracy theory to suggest that the government will use data it collects to do bad things at some point in the future, it is simply the way it has been since the first census was taken thousands of years ago. Furthermore, the assumption that the government will abide by any rules about storage or privacy that happen to be in place is simply naive. I tell my kids how to answer certain questions at the doctors office in an attempt to keep certain data out of their records, but it is a losing fight.
Completely understand. We (tbl is a team) do not go to the doctor unless we absolutely have to and even then we do not take the medicine unless it is an antibiotic. You are correct, history has shown us that the government will use that data and it will more than likely be used against us, not for us. I am sure it is harder for you when it comes to your children, keeping kids safe from situations like this is a full time job in its self.
Very educative post. Keep it rolling.
Thank you. How do you feel about Governments storing DNA like this?
I like your information according to
DNA.
Glad you liked it. What are you thoughts on them keeping the DNA?