Strollerderby

What If The State Kept Your Kid's Blood for "Research?"

Posted by JeanneSager

I never thought about what happened to the blood sample taken from my daughter in the maternity ward after she was born . . . until now. 

Apparently in Texas, blood samples taken routinely from newborns are kept on hand to be used for research. Which doesn't bother me in the slightest. 

But a bill making its way through the Texas Legislature will give parents who DON'T want their kids' blood used in research an out; they can ask for the blood sample to be destroyed rather than held onto by the state. 

I understand there are huge privacy concerns here. Even though the state assures parents that the baby's names are not connected to the individual samples once the screenings for disease and defects are completed, we've all seen privacy breaches around the nation on supposedly "safe" credit card information, social security numbers and more. Who's to say health information is safe?

But I'm not sure I see the concern here. Is it that kids might be discriminated against if it gets out that they have a certain disease? Or that parents don't want the blood used for research? Because only three parents have actually complained about the issue so far. In one of the top states in terms of population, we're talking ridiculously low numbers of parents here.

Would you care what happens to a small vial of your child's blood?

Image: Maine.gov

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Comments

 

leahsmom said:

As someone with chronic conditions, I'd ask for it to be destroyed - I know that you can be discriminated against, medically and otherwise, for medical conditions, regardless of where they came from.  I'd bet that is the concern. I am likely over-paranoid about it, but I feel like you never know - and it's just easier not to have the information out there than do information control after, say you get turned down for a job interview after your employer found your medical records online.

March 19, 2009 3:18 PM
 

becca said:

I'd want it destroyed....and basically just because I'm sure they'd be fine without it.  

March 19, 2009 3:50 PM
 

rsc1835 said:

I saw this on the news and it's incredible that the state of Texas didn't seem to care that parents were concerned with privacy issues, etc.

I definitely understand in furthering research but at minimum they should have asked for consent from the parents.  The amazing part is most parents would have probably said yes anyway.

March 19, 2009 4:27 PM
 

M said:

I think rsc1835 is right- it's a consent issue.  As a Texan mom, I'd have let the gov keep it if there was a reasonable explanation, but I would have liked to have the option.

(Ubacked theoretical generalization warning)I think most Texans have a general mindset that the government should keep information about citizens on a need-to-know basis only.  Anything more than that is grounds for suspicion.  After all, we don't need them meddlin' in our business :)

March 19, 2009 4:45 PM
 

Laura said:

Has anyone read Next by Michael Crichton? This reminds me of that book. Creepy...

I would definitely want it destroyed. I consider it an issue of informed consent.

March 19, 2009 5:28 PM
 

botanist said:

Don't you usually sign a paper which states that you let the hospital to use for research all the specimens, which they collect during medical procedures?

BTW, researchers get the samples without names.

March 19, 2009 9:40 PM
 

Knitty said:

I agree with you, Jeanne -- I just don't see that much potential for harm.  If my child's already-drawn blood could be used by researchers to someday cure or prevent autism, I'd gladly hand it over.  As Botanist pointed out, researchers aren't given a name attached to the blood, and as awful as things sometimes seem in this country, we're a long way from Gattaca.  

March 20, 2009 2:29 AM
 

maeby said:

as long as the blood isnt use to clone my kid im cool with it.

March 20, 2009 9:47 AM
 

km said:

I was asked to donate my son's blood for research when he was born last year in Oregon.  I agreed, I'm all for that sort of thing.  Although, now I have to wonder, when I had my older children (in NY), was there blood taken for research, or just destroyed, because nobody asked me about it.

Anyway, I agree it's an informed consent thing--I had no problem donating the sample, but I would be a little skeeved out knowing they just took it (although, really, I wouldn't care enough to do anything about it).

March 20, 2009 12:43 PM
 

Manjari said:

I wouldn't mind at all if my children's blood was used for research.

March 20, 2009 1:06 PM

About JeanneSager

Jeanne Sager is a writer who lives in upstate New York with her husband, daughter, a dog and too many cats. She refuses to believe motherhood comes with pumpkin appliqued sweaters, and she';s not ready to apologize for having only one child. She writes about raising her kid in her own hometown and the mom stuff she's not embarrassed to own at her blog, Inside Out (http://jeannesager.blogspot.com), she's contributing editor of Grand Magazine, and she's a regular essayist here on Babble

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