Parents Question Access To Mandatory Baby Blood Test

SAN FRANCISCO (CBS) – Every baby born in the U.S. is supposed to have it – A blood test that screens for genetic diseases.

The test saves babies from serious brain damage and even death, but what happens “after” the blood sample is taken? You may be surprised, even shocked, to find out.

Soni and Mauro Pislor just learned abut it. Their son Diego was born just last month and they remember the needle prick in the baby’s left heel, that he got right after birth.

The hospital told them it was to test for genetic diseases. It turns out there’s more to it than that. After the blood spot is screened, it’s stored in a giant state database. Diego’s DNA, along with the DNA of every baby born in California, will be kept for at least a generation, and used for genetic research.

“I had no idea, really,” said Mauro Pislor.

“It would have been nice to know that they keep that,” said Soni Pislor.

“Right now there are about 15 million blood spots stored,” says Dr. Fred Lorey. He runs the state’s Newborn Screening Program and said the blood spots are used for a variety of things, all very beneficial.

He said state researchers use the spots to develop new tests that can screen for new diseases.

But the state also allows others to access the database. A CBS 5 review of state records show some requests come from parents, like Chris and Amber Harris.

They’ve been fighting to get Chris’ daughter Micaela back from South Africa where she was abducted, and needed her DNA to prove Chris was her father.

“I just thought ‘I wonder if they save those samples?,’” said Amber.

Sure enough, Micaela’s blood spot was in the state’s databank and proved Chris’ paternity.

“The fact that they had the samples is such a blessing,” said Chris Harris.

But there are other uses for the blood spots that are more controversial.  The state also gets requests from researchers.

“We get somewhere around 40-50 requests a year,” says Dr. Lorey.

He said there are strict guidelines concerning the types of research allowed.

“They have to be related to the public health of mother and child.” And to protect privacy, the spots don’t have a name on them, just a number.

“Only certain people in our program actually have access to that,” he said.

But that’s still not sitting well with Mauro Pislor.

“They have the DNA of my son and they can do whatever they want, and I don’t even know,” said Pislor.

Other families feel the same. There have been lawsuits in Minnesota and Texas, which had to destroy 5 million specimens last year.

“This is really is a DNA property rights issue,” said Twila Brase with the Citizens Council on healthcare in Minneapolis, who said DNA could be misused. “It could be used against the child eventually, later on in employment and insurance decisions…They are conducting research without the consent of the parent or the child.”

“We make every effort to inform them,” said Dr. Lorey, who said the information would not be distributed in such a way.

CBS 5 couldn’t find any reference to the database in the information booklet that parents get.

A test request form does say the spots will be used for research, “unless you specifically request in writing that your specimen not be used.” But it also said in small print that the state “may not be able to comply with your request.”

The Pislors said amid all the paperwork they had to sign, they never even saw that form.

“DNA is one thing, testing for diseases is another. We are not being told. Not good!” said Mauro Pislor.

Dr. Lorey said, since the DNA database was started way back in 1980, no parent has ever been denied a request to have their baby’s blood spot destroyed.

He said his department is in the process of reworking the information booklet to make sure parents are more informed. But there is still no proposal on the table to have parents actually sign a release form.

For more information on California’s Newborn Screening Program:

For more information on the Minnesota lawsuit:

For more information on the Texas lawsuit:

For ethical discussion on the pros and cons of the blood spot databank:

(© 2010 CBS Broadcasting Inc. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed. Bay City News contributed to this report.)

  • Lee White

    This test is not mandatory. Parents have the right to refuse it.

  • Antia

    I don’t remember them asking or telling me I had an option to refuse, especially with my first that was a premie. As I recall they acted like it was very routine(which of course it is)

  • mandjmomma

    Please don’t let this story deter you from Newborn Screening. Our daughter’s life was saved by these tests. Please opt out of the storage of DNA only. Like us, you may not know you carry the gene for a rare medical disorder. Our daughter would be severely brain damaged if not for Newborn Screening.

    • Targ

      I do not deny that genetic screening is an extremely useful (some would say indispensable) procedure in neonatal and infant care. However there seems to be a lack of “informed consent” regarding the state’s database. Research guidelines require a large ‘sample size’ in order to draw meaningful conclusions, but the entire population?! Sounds fishy to me.
      It’s not the screening test I have a problem with, it’s the storage of data without clear, prior notification. A simple checkbox and signature line for refusal would be more than enough for parents to uphold their right to medical privacy. Note I said privacy, not simply anonymity; they’re not the same.

  • Nanette Solem

    This is not ok. The Government is way to involved in our childrens right. They seem to be more worried about their research that the rights of our children. Newborn screening is fine. Keeping our childrens blood for their own research is appalling

  • Iris

    I am not opposed to the screening, I think that is a valuable service, but I am concerned about what happens to the blood samples afterward. Having a warehouse full of everyone’s DNA is kind of scary. This report did not say much about what research the samples are used for. I think if they want to use it, the parents or donor should give consent. By taking these samples and using them without that consent is an abuse of power. I have had three kids and I attempted to take part in the choices of what tests they would have after birth. When a child is born in a hospital the parents have a lot less say than you might think. The staff is accustomed to processing the births and, often times, the tests happen regardless of forms or written requests. I asked what happened to the placenta after the birth and I was told it was the property of the hospital, it was a biological that needed to be handled according to their policy. I later found out that it too is used for medical testing as a standard practice. Personally, I am in awe of the liberties that are taken by the medical and government facilities in the name of “progress.” I do not want to stand in the way of progress but I do feel that people should have the right to choose. When did our bodies or what our bodies create become the property of someone other than ourselves without our consent?

    • Nanette Solem

      Wow, you hit that nail on the head. Try Googling what they used to do with Soldiers. The Government takes a lot of liberties with their citizens. I am an American Indian/ Tsa-La-Gi…We now have our own hospitals. The people Which is what Cherokee means. Believe that Choice is what makes us free. I really liked what you had to say. Thank you

      • Nina

        Dear Nanette,
        You worry about your privacy vis-a-vis the government storing these blood spots. But, let me tell you what I have found out from 20 minutes online:
        You live in Bethel Island, California. Your husband’s name is Lynn and you have had 9 kids and 28 grandchildren. Your kids names are Tammy, Jamie, Michael, Julie, Shawn (nickname, ShaSha), Heather, and Aki and Zaky (who have both passed on). One of your kids had down’s syndrome. You had your first child at the age of 20. You go by the nickname Nana. You are 56 years old and unemployed. You have no insurance right now. Your maiden name was Avery and you graduated from Covina HS, but went to 6 high schools before graduation. You were born in Wichita Kansas. You do not own your home on Taylor Rd. Your phone number ends in 88. You have 3 dogs, named Lily, Teddy and TaYa Angel and love chihuahuas. Your chihuahua Peanut died in 2009. Your favorite celebrities are Colm Meaney, Tom Hanks and Rod Stewart. You love anything American Indian, and have lots of dream catchers around your house.
        I discovered all of this in about 20 minutes.
        I did not get any of this information from the government.

  • Edie Houston

    I certainly don’t question the wisdom of screening, although I was never asked to consent to it. I was just told it was routine. What I think is in question here is one of ownership of the genetic material. While I don’t think anyone would argue the benefits of having such a databank of DNA available to identify victims or recover abducted children, history will show us than any purpose can be perverted. We do not know what the future will bring. Who knows what they will be able to tell from a blood spot in 50 years. I would hate for my child to be denied because of an undesirable genetic quirk. On the other hand, I would hate for him to die of a condition that could have been cured because of research performed on that single blood spot. I think this is one of those decisions that comes along with the difficult job of being a parent. I feel the parents should have full disclosure and should make the final decision of what is done with the left over genetic material.

  • Current PHP 5 News « Web Hosting Blog

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  • Teri

    Shock? How about DELIGHT! How wonderful that medical scientists have the ability to learn how to detect, prevent, manage and cure diseases through genetic testing and research! This is a Godsend. Anyone who is against genetic research is against cures for cancer, disabilities, diabetes, blood disorders, and so much more. Every child in the nation has the opportunity to help cure diseases in everyone, just by being tested for diseases that may harm or kill them when they are infants. This is a win-win-win situation. Do not give in to fear and paranoia. There are strict guidelines in place for privacy and appropriate use in research, and the potential benefit for the next generation is incredible.

    • Kelly

      There are strict laws in effect that prevent misuse of bloodspot samples and that protect individual privacy. Research on bloodspots saves babies lives! This is all to help our society. Destroying bloodspots means that no further research can be done to add more diseases to the newborn screening program. We can prevent more children from suffering and families from being traumatized by the loss or servere disability of a child. No rights have been violated by newborn screening. The only thing that has happened is that new diseases are added through research advances and babies lives are saved.

  • Patti

    We do not do DNA profiling unless the child has a disease that needs a DNA workup. The government does not have enough money to do a DNA test of every baby! The government does not even have enough money to let me perform my valuable work 5 days a week let alone perform an expensive and time consuming DNA profile for millions of babies just for kicks! The Department of Public health performs a valuable service.

    People who fan those fears are just meddling; shame on reporter Juliette Goodrich she is purposely spinning this story as negative. There are thousands of good things that can come of the child’s blood being stored and used for research to save babies in the future, maybe even YOUR baby.

  • Nanette Solem

    This isn’t about what is good for a parent to decide for their baby. We all agree that it is wonderful to be able to do this. The problem is that they are doing this and saving the blood of our children without permission. That is not OK. This country presents itself as a free country. Choice is what freedom is about. The people STEALING this blood are not giving the parents or the children choice. That is not OK. Shame on Americans for so readily giving up their childrens Freedom.

    • concerned

      Once your baby’s DNA most outside the control of your doctor it can be used for good, or for bad. Eugenics has been touted as a means by which to control/limit/reduce the world’s population since the days of Darwin. Your baby’s DNA may not be made up of the stuff that is deemed “good enough” to allow them to reproduce or even live. This is an extremely dangerous breach of privacy.

  • Juanita A

    Our newborn screening program is a vital tool for insuring healthy babies. I’m concerned your report will unnecessarily frighten parents from having their child tested for up to 40 diseases that can either kill or seriously damage their babies. Your report should have included a discussion with parents whose children were not screened under the current program. Our son suffered irreversible brain damage 12 years ago due to an undetected metabolic disease that our current newborn screening system can now pick up. While the system is not perfect, it does a remarkable job of saving lives and families the heartache of having a child with lifelong health issues.

  • very concered

    i agree that genetic testing is a good thing. we have a genetic disorder that this is helping our family with in coping, tracing, and making more informed decisions about our babies… what i do disagree with is their method. we are told this newborn blood test is mandatory at birth and that all babies have to have it. even though i DID read the booklet, nothing was mentioned in that said booklet about this topic (ie: keeping the blood spots and using them without our consent for other testing by the health dept.). they need to make the booklet more informative and give US the parents the choice on this matter, not just do it behind our backs. who is to say that down the road its used against our children as the news says in insurance, jobs even to convict them ? the health dept says that no one has access to the dna bloodspots but for health matters, but who is to say that for sure in 15 years from now ? i for one don’t like that i was not informed properly about this; and how dare they lie or hold back the truth to us parents about OUR childrens dna.

    • Nanette Solem

      Well said..Thank you

  • Pat W

    I am appalled! It is obviuos that what “they” say and what “they ” do are two entirely different things. What about a suit like the ones the forced Minnesota and Texas to destroy their data bases? The ACLU should get involved. Every baby born in California since 1980 has had their rights violated!

  • Michelle

    Wait until we’re on GOVT RUN HEALTHCARE… You think this is all stored just for “research”? Come on!! It’s no surprise that for the last twenty or more years socialized medicine has been a goal of the left, and that this timeline is very close to when DNA started being stored… What happens in the future when two people who have genetic factors want to have children but are insured by Govt?? Scary stuff people – you need to wake up.

    • Nanette Solem

      I agree with you completely. The Blacks and the Native Americans can tell you all about it.

  • Tom

    I am a phlebotomy tech at Kaiser and I don’t like the fact that I did not know this test I am doing to babies may be used against them some day for rich insurance companies to discriminate against them. It reminds me of the movie Gatica. I think this database issue needs to be fairly disclosed and limitations to its discloser be cast in stone to never be allowed to be used for any thing else other than research approved to prevent and treat diseases.

  • Nanette Solem

    I think the best thing we can do is to inform the public. If this is going on in California where else is it taking place? The rights of our children seem to be at stake.

  • Kelly

    For those who are so worried about the state holding on to bloodspots–you seem to have a deep distrust of our government in general. Governments have tons of information on every citizen. They collect data on where we were born, our names, our parents, where we live, our telephone numbers, email addresses, how much money we make. There are traffic camera’s watching us drive, walk across the street, enter buildings. If you use MedicAid (MediCal) or Medicare, the government has all of your/your child’s health information. if you used a state run hospital to give birth (UCSF, UCLA, UCI, UCSD, etc.) all of the child’s health records are in the government’s hands anyway. You can make yourself crazy with all of this worry or understand that the government is not a nefarious entity out to harm its citizens but rather collects this data to protect us and ensure the rule of law. Picking on newborn screening is just a red herring. The government is not collecting this information to somehow prevent you or your child from getting insurance, traveling, or any other wild scenario you might imagine. Your neighbors don’t know how much money you make or what grocery store you went to yesterday. The government is not making any of this information available to the public. No private newborn screening data is ever disclosed either. There are laws on the books that prevent the disclosure of private health information. No one has or ever will be denied health insurance as a result of the states’ storage or use of newborn bloodspots. To suggest otherwise is simply overt paranoia.

    • Nanette Solem

      I can’t believe that you would think this has anything to do with being worried about our government. They need to have limits ..Have you read the Constitution? As an American Indian, I can tell you that you had better protect your rights or you won’t have any rights to protect. Stand up for a Government BY THE PEOPLE for the PEOPLE..We are the people.

    • Nina

      Dear Kelly,
      Great comment. Thanks for standing up for reasonableness!
      To Nanette Avery Solem of Bethel CA: the Government DOES have limits and nothing that is happening here is infringing on anyone’s Constitutional Rights. Go back to school and get an education!

      • Nanette Solem

        I think that was a fairly mean and uneducated response. Enough said.Nina
        If you are so open why is it you are afraid to post your full names. And emails.

  • Nanette Solem

    Well, unfortunately, Nina would not let me leave a reply. While some , not most of the information was correct. My addy is Bethel Island..I do not live there. My children are ALL Still living..Just so you know…I don’t give a hoot what the government knows about me. I never did, just ask them. You however while finding all this out about me never mentioned the I am a BornAgainCHRISTIANCherokeeIrishWoman…I love Jesus and fully expect my government to fail me. You should also know that I care very much about you Nina. Where ever you are, I didn’t try to find out. I post my whole name and allow you to reply. I am not afraid of anyone. I will however stand up for the rights of PARENT to decide who has information on there children. I am doing that because it is the right thing to do. God Bless

  • Nina

    Then I guess you live in San Leandro. I knew all the rest, but wanted to show you how ridiculously easy it is for anyone to find out tons of information about people. I don’t post my full name and email because I understand real privacy and want to keep mine. But, I am not in the least bit worried about the government having my child’s blood spot and know it will protect my privacy and that of my children. I am glad the government is collecting this. Otherwise my child would have died!!!! I know you can relate since you lost 2 children. What you are doing is NOT the right thing to do. By continuing to spread the lie, more kids will die unnecessarily. The government is using the blood spots to save babies’ lives through research for better detection through newborn screening. What if your children could have been saved by the government having the blood spots? Would you feel differently? Please don’t contribute to the unnecessary deaths of more children. You say you are a Christian, then think–What would Jesus do? Would he let these kids die or give researcher the wisdom to find ways to save them? Is your peace of mind worth the life of a child?
    On a conciliatory note, your jewelry is pretty.

    • Nanette Solem

      save their lives with permission.

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