21 May 2008

In the name of blood

Gov. Pawlenty Protects Genetic Privacy Rights - Vetoes "DNA Warehouse" Bill
For me, I don't really care how you slice it, this is nefarious stuff and the arguments for this "DNA collection" are weak. Under the guise of "screening" newborns, who knows what the heck THE STATE wants to do with this information. This is not merely providing one piece of data, like your blood type or shoe size, it provides your entire genetic make up to the Health Department.

If this is in the name of screening newborns, well then screen right then and there in the hospital and dispose of the blood (hazardous waste) immediately, DON'T STORE IT so you can later come up with a bunch of ideas about what to do with the blood, many of which could entail uses we could only imagine.

The argument that this will slow tests or test development for rare diseases is fluff. Since when is the State in the business of doing this (I could be wrong here) but this is big pharm's ballywick or best left to the folks in a research department at the University. Do they really think we believe this isn't already being done or hasn't already been done?

One of the diseases they claim they want the DNA for is phenylketonuria, or PKU. A simple blood test already exists for PKU (and many other diseases), so what the heck are they wanting DNA for? Get the State out of the business of doing the private sector's job. Let these companies or universities do a study and collect blood from willing participants. Go get your own d*mn control group. What's the problem? Folks aren't so willing to hand over their kids' DNA to a bunch of strangers? Go figure.

What a bunch of crapola. Maybe we should start with DNA samples of all the members of the House and Senate, their spouses and children, then we can talk.

This issue was discussed in our homeschool group. I heard that the State was already doing this (collecting DNA) and was told to stop. I had my kids at St. Joe's and no one took their blood. Despite the drugs from the C-sections, I didn't allow my kids out of my presence or my husband's. They were never alone with any of the nurses, we didn't do any vaccinations or tests. The only test they received was a hearing test. Control freak that I am, it seems like a wise move in retrospect.

Goodness, can't even have a baby without worrying that someone is going to stick a needle in them in the name of science.

Thank you, Governor, for the veto.

At The Capitol / Newborn blood-storage bill vetoed
Pawlenty rejects 'opt out' provision in research program
By Jeremy Olson

Gov. Tim Pawlenty vetoed a bill Tuesday that called for broadening Minnesota's collection and storage of newborns' blood samples for the screening and study of rare diseases.

The end-of-session move by the governor is the latest step in a long-running debate over medical advancement versus privacy rights.

In a letter to legislative leaders, Pawlenty said he supports the collection of newborn blood samples, which are used initially to screen babies for more than 50 inherited and congenital disorders. But the bill would have required parents to specifically "opt out" of having their babies' blood samples stored by the state Health Department and used in medical research.

The governor wants parents to "opt in" by signing a consent form before the state can collect the blood samples for this purpose.

"Government handling and storage of genetic information is a serious matter," he said in the letter.

Current law already requires parents to opt out of the initial blood screening of their newborns. Pawlenty's decision doesn't change that.

Rep. Paul Thissen, DFL-Minneapolis, said the veto undermines the program and defies a promise he said he obtained from Pawlenty two weeks ago that he would sign the bill if certain changes were made and if it got significant support in the House. It passed with 103 votes.

"The veto is yet another example of your breach of a personal commitment to legislators," Thissen wrote in a letter to Pawlenty.

The veto contradicts the governor's own Health Department, which has argued that it needs to collect as many blood samples as possible to identify and create tests for rare but serious newborn diseases, such as phenylketnonuria, or PKU, a metabolic disorder that can result in mental retardation if left untreated.
An opt-in policy for parents could reduce the number of samples collected by the state, said Mark McCann, program manager for the Health Department's newborn-screening program.

"Long term, it will probably slow down the ability to develop and implement new testing," he said.

McCann said Health Department officials would meet with the governor to discuss his concerns and also will seek legal guidance about requirements under the current law.

The department has continued to require parents to "opt out" of the storage and research of blood samples, despite criticisms from a privacy group and a ruling last year by an administrative law judge that sided against that practice.

The privacy group, Citizens' Council on Health Care, released a written statement accusing the Health Department of breaking state law since 2006 and demanding it change its practices.

"No more children should have their DNA and genetic code owned by the government, without their parents' written informed consent," said the council's Twila Brase.

This report contains information from the Associated Press.

* Kare-11's coverage
* Star-Tribune coverage
* Wired - Newborn Blood-Storage Law Stirs Fears of DNA Warehouse
* Citizen's Council on Health Care


Laura The Crazy Mama said...

You should have seen the look on that (insert not nice word here) nurse's face when I told her I DID know what the test was and yes, I DID sign the opt out form already (for the 3rd time). She even tried to "tattle" on me when she saw my doctor was visiting me. Haha on her...my doctor looked at HER like she was crazy and she shut up fast. I didn't even do the hearing test because I knew he could hear (he would wiggle or jump every time there was an abrupt noise...even in my tummy!). I only did the vitamin K shot but I'm still looking up info on that one. No stupid eyedrops, no vaccines, NO "PKU testing". I still have to get those forms to have the other kids' samples destroyed (as if that will even happen?).

swissmiss said...

I was made to feel like a complete conspiracy theorist when I opted out of everything, just like you. No eye drops, no tests, no nothing. Since we didn't let my son have the Vitamin K shot and he didn't have a pediatrician yet (he was our first kid) the "assigned" baby doctors at the hospital refused to circumcise him. Fine and dandy. Day 8 arrived -- when newborns now gain the ability to clot blood (you'd think we were Jewish), and Number One got snipped by a pediatrician at another hospital.

My mom was a nurse, but by goodness, some of those ladies are like Nurse Kratchit. Some were insisting that since I had no recent physical on file that the C-section couldn't happen. They called a resident to come and give my a physical as I'm sitting on the gurney getting prepped for surgery (my doc wasn't there yet). You would've thought the sky was falling! My doc walks in and sees all the chaos, has me cough, takes my pulse and signs the form that I passed the physical. The doc had been my OB for awhile and had seen my insides and out, it's not like he had no clue what my state of health was. Then, the nurses were INSISTING on giving me a shot for something. Can't even remember, since it wasn't on my chart. I said somewhere in my records it showed I was positive or negative for said ailment and didn't need a shot. Oh, no, not good enough. I told them even if I needed the shot, which I KNEW I didn't, I wouldn't let them give it to me anyways, so let's get on with the show. One nurse refused to take the painful IV hook-up out of my arm the morning after I was all done with drugs and such. Might need it in case of emergency. I told her to take the damn thing out or I would rip it out. My doc came in, laughed and told her to remove it. I'm not a very good patient.

If you know of a link to a place where you can down load a form to have newborn blood destroyed, can you let me know? I am sure moms in the homeschool group would be interested in getting their hands on it! Thanks!

sexy said...
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