Newborn blood used in research angers parents

Jocelyn - posted on 02/08/2010 ( 12 moms have responded )

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Newborn blood used in research angers parents

http://news.ca.msn.com/top-stories/msnbc...



WASHINGTON - A critical safety net for babies — that heelprick of blood taken from every newborn in the U.S. — is facing an ethics attack.



After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus' developing heart or which genes trigger childhood cancers.



But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health's most successful programs. Texas is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.



Michigan just moved 4 million leftover blood spots into a new "BioTrust for Health," planning a public education campaign about the research potential and how families can opt out.



Advisers to the U.S. government hope to have national recommendations by in two months on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.



"It's a critical thing that we take action," says advisory board member Sharon Terry of the nonprofit Genetic Alliance. She says distrust over the leftover blood spots threatens public confidence in newborn screening itself.



"The sunshine on the information — educating parents — is the way lesser threat. Done well and done right, there will be an enormous benefit overall to the system," she says.



Test screens for 29 rare illnesses Newborn screening is not new. It began in the 1960s, and today every baby is supposed to be tested for at least 29 rare genetic diseases in hopes of catching the fraction who need early treatment to help avoid brain damage or death. Now being added to the list: Bubble-boy disease, formally known as SCID for severe combined immune deficiency.



The program catches about 5,000 babies a year in need of treatment.



Because newborn screening is mandatory, only a handful of states provide much upfront parent education. Leftover spots mainly are used for double-checking that newborn tests are accurate. Sometimes, families ask geneticists to study them after a child's death from a disease doctors can't immediately diagnose.



But as scientists sought to use the leftovers for broader research, suddenly the informing of parents — especially about long-stored spots — became an issue. While blood spots are stripped of identifying information before being handed over to scientists, people generally need to consent to participate in research.



"My kid is not a lab rat. You have to ask before you can use him in an experiment, before you can use his blood, his tissues, his DNA, whatever," says Andrea Beleno, one of the Texas parents who sued. Among their worries: that genetic information about the children could fall into the wrong hands.



Had she only been asked, Beleno adds, she probably would have let her son's blood spot be stored.



To scientists who pore through dusty warehouses in search of blood samples stored by health department ID codes — not the babies' names — privacy concerns are exaggerated.



"There's a gap between the name and the DNA. ... There's no way one could just put one's hands on these blood spots and know anything about that person," says Dr. Christopher Loffredo of Georgetown University, who needed families' permission to cull about 1,200 blood spots stored in Maryland for a study that linked a pregnant woman's smoking or exposure to certain chemical solvents to fetal heart defects.



Still, Dr. Jennifer Puck of the University of California, San Francisco, who created the new SCID test using leftover blood spots, understands parents' concerns.



"DNA is your personal signature, and it uniquely identifies us," Puck says. "We all have to become more careful and more specific in terms of what we're going to do with the blood spots."



Bioethicist Aaron Goldenberg of Case Western Reserve University studied parent attitudes, and found three-quarters would be willing to have their baby's leftover blood spot used for research if they were asked first. But they generally oppose that research without consent.



The balancing act for states, he says, is separating the two issues — lifesaving newborn screening and other use of the leftover blood — in the little time available to educate parents.





So ladies, what do you think? Is this an invasion of privacy? Should they need parental consent to be able to store the spots? If you had the choice would you allow your child's spot to be stored and researched?

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Rosie - posted on 02/09/2010

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when my last 2 children were born they asked if they could take a DNA swab from my childs cheek. it was for identifying in case of abduction, or identifying remains. heel pricks i could give a crap about if it helps others, i don't see it as in invasion of privacy. in fact i would even go as far as saying i think everyone in the country should have their DNA taken for the purpose of solving crimes. my sister was raped and if we had this system set up, the pervert that did that to her would not be out on the streets still terrorizing other women. i think of all the unsolved murders out there that could be solved if we had this in place. many people who kill, will kill again, but if they were locked up after their first offense with the help of this DNA their other victims would be saved. opponents to this would say it invades privacy and costs too much to test all that DNA. i say if you have nothing to hide, you have nothing to worry about, and i think that all the man hours involved in searching for someone would cost a heck of alot more than a dna test.

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Michelle - posted on 02/11/2010

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I don't think it's really that big of a deal. I kind of feel like getting all upset about just not knowing is a little pointless. If you would have had they asked then there's no reason to be upset. Yes, it was wrong NOT to ask, but you can't do anything about that. I signed for my son's sample to be kept because it won't be just ONE sample that helps cure a disease or whatever, it will be all of them. The research that these samples help is so extensive that they need all the data they can get, and it's not like they can set up some database and use the DNA in any way that will effect my son or my family. They have no way to link to it him.



And honestly, I see no problem in having an all inclusive DNA database, if it were managed properly.... The crimes and health problems we could solve with it are totally worth it, plus those of us with nothing to hide have nothing to worry about. It's not like they're going to clone us all or us our DNA to frame us or something crazy like that.

Kate CP - posted on 02/11/2010

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Yea, it's different when it's YOUR kid's blood they stored. The state of Texas has my daughter's DNA on file for whenever they want and that does bother me. Why does it bother me? Because it IS an invasion of privacy and it's a violation of the 4th amendment. Do I think the state of Texas is going to use this as a way to frame my daughter for some future crime? Nope-cause honestly that is really paranoid. But it bugs the hell out of me that did this without even the hint of a notice to parents. I had no idea this was happening until my husband and I got a notice about it a couple of months ago...AND MY DAUGHTER IS NEARLY 4!!!

If I had been at least aware of this I would feel better about it. I would even willingly donate my daughter's cord blood to science if they asked me! But they didn't ask, they just kept it when we all assumed any left over blood would be destroyed. So, yea, it bugs me a lot. I guess it's different when it's your kid and your kid's blood they took.

Ez - posted on 02/09/2010

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This is just such a non-issue to me. If my daughter's drop of blood can be used to find cures or treatments for other sick children then I'm all for it. I am not paranoid enough to think they are starting a DNA bank, or monitoring my family.

Sara - posted on 02/09/2010

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People tend to get their panties in a bunch about nothing...the current political climate makes them paranoid.

I work in an infant vision lab, we use voluntary subjects from 3 months to 3 years old to help understand some issues and treatment of ocular disorders in children. It helps people. We get names, perfectly legally, from birth records in our country, but some parents get all shitty when we call to try and recruit them because they think we're all up in their private business...whatever. I don't understand that attitude. I say if they can use the blood they got from my daughter to help cure some common childhood affliction, by all means, do it!

La - posted on 02/09/2010

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IMO I do think it is an invasion of privacy. They should need consent to store spots. I would not consent to my child's DNA being stored. I'm not against medical research, but I am against being part of a study without my knowledge or consent. I feel that starting an all inclusive DNA database is a problem waiting to happen.

JL - posted on 02/09/2010

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I don't see the big deal and I actually signed consent forms with both of my kids ( they were born in two different states) to have their blood pricks used for further research on things like environmental impact and genetic predispositions to certain things like Diabetes and Lupus. What is wrong with finding out what factors may cause certain infants when the become older to develop things like Diabetes, Kawasaki Disease, and such. How does that hurt things.



Since I signed consent forms for the testing I was actually sent information on some of the research they conducted using my kids blood prick. The diabetes research on my sons prick showed that he is not have the genetic precursors most often associated with children that later become diabetic so he will most likely never have to deal with it which I was grateful to find out because diabetes runs on both sides of the family.



Some people will make a big stink about anything...lab rat out of my baby..seriously they are using a blood samples to test out ways to save lives they are not experimenting on an actual kid.

Jocelyn - posted on 02/09/2010

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I don't really have a problem with it either, although it would have been nice to be asked lol. If they think that they can use the spots then why not? You ladies are too agreeable! I thought for sure we'd have at least one lady get all up in arms about it! Maybe I should post this on the welcome page.... ROFL

Heather - posted on 02/09/2010

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I guess its because I have worked in the medical field for the past 15+years...but seriously, most people never give a second thought about what happens to bio waste...i am glad they stored my sons drop of blood for research...how is that worse than just pitching it out?

Nikki - posted on 02/08/2010

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They asked us right before they did it and brought us pamphlets ( I live in Canada) It's a small prick on the heel a blood sample to make sure my son was healthy, why not?!?! Wouldn't you want to know if there was anything wrong???

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I don't see a problem with it. I'm glad they are doing research. But I can see how parents would be upset. Getting parents to sign a simple consent form would be so easy. As far as the blood spots already being stored, maybe send out a general form to parents making them aware of what is going on. If they don't want their child's blood spot being used, they can sign the form, send it back and the blood spot can be tossed.

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