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Minnesota Gene Pool Blog

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Citizens Council for Health Care wants to destroy NBS bloodspot archive

Newborn screening blood spots are collected on virtually all newborn babies to test for rare and hidden diseases. These diseases need to be identified and treated prior to the onset of symptoms to avoid lifelong disability or death. The Newborn Screening Program has been ongoing in Minnesota since 1965 and has saved hundreds of individuals and their families from the worst effects of these diseases. Newborn screening samples are also useful for research and quality control to improve the program. They also are a close mirror of the population since they are collected on virtually all newborn babies. This is potentially very bad news for all of us who live here because it would be a significantly hamper the NBS program in their work to develop new tests for newborns and to assure that the program maintains its high quality of testing. This also means that we may lose a population-based repository of biological samples which are needed to determine the frequency and health outcomes associated with subtle genomic changes. That is the bad news.

The good news is that this may force Minnesota to develop a system of informed consent that will result in a public that is much better informed about newborn screening, in specific, and genomics, in general, including the need for research and the implications of genomic information and technologies for health. We need to have a basic understanding and support from the citizenry if we are to move this forward.

This feels a little like losing a battle to win the war. We will be following this very closely. The story from the Pioneer Press is below in its entirety.

From the Pioneer Press, July 12, 2007:

Minnesota Health / Activists: Destroy blood samples State wants infants' blood kept for study, but two judges say no

BY JEREMY OLSON
Pioneer Press
TwinCities.com-Pioneer Press
Article Last Updated:07/12/2007 09:50:12 PM CDT

Emboldened by two favorable judicial rulings, a Twin Cities privacy advocate is demanding that the Minnesota Department of Health destroy thousands of newborns' blood samples that it kept indefinitely without explicit permission from parents.

The demand by the Citizens' Council on Health Care follows a July 3 ruling in which Minnesota's chief administrative law judge, Raymond Krause, said the Health Department lacked legal authority to keep the samples, even if it did so to improve public health.

The department was operating under the assumption it could keep blood samples indefinitely when parents didn't specifically request that the samples be destroyed within 24 months. Krause ruled that the department legally needed more than an assumption to do that.

Twila Brase of the citizens council wants Health Commissioner Dianne Mandernach to promise that all samples will be destroyed by early August: "There should be no delay. The commissioner has already appealed the judge's decision and lost."

A state health spokesman said the department is still determining whether it has any legal or legislative options that could overturn the decision.
Without screening, 135 babies in Minnesota would have died or suffered serious harm last year, the spokesman said.

By law, blood samples are collected (unless parents refuse) to determine whether newborns are at risk for certain metabolic or genetic disorders, including the PKU defect that can result in mental retardation if not detected early. The department has amassed 670,000 samples for use in research of these serious but rare disorders.
Ironically, these legal challenges started when the Health Department sought to increase the privacy protections of its newborn screening program.

Brase and others seized the opportunity to complain during the required public hearings for such rule changes.
An initial March ruling by Administrative Law Judge Barbara Neilson upheld existing state health rules requiring parents to sign documents opting out of screening tests for their newborns. Neilson ruled against the state's collection of blood samples, though, prompting an appeal by the Health Department.

Brase has been a vocal critic of several state efforts to collect personal health data and use it for research and the creation of standards of medical care.

Jeremy Olson can be reached at jolson@pioneerpress.com or 651-228-5583.

Posted by Kristin Oehlke on July 16, 2007 2:37 PM |



Comments

The NBS is definitely important, so parents do need to be informed about the procedure and how it helps their child. The health department of the local government should take this seriously, because some parents hardly know anything about the hidden diseases that need to be detected right away.

Posted by: Addiction | October 2, 2007 4:13 AM

Thanks For Information..

Posted by: beginads | October 27, 2007 10:13 AM

I think the use of inform consent has to be pushed since the blood test result will be used for research and the implications of genomic information and technologies for health. No one can take advantage from the newborn babies unless with the permisioon of the parents

If this system can be implemented, the health care system Minnesota will be one of the best, and the example for others how to conduct ethical issue for everybody.(http://www.childandhealth.com)

Posted by: Neta's mom | November 12, 2007 3:21 AM

Thanks for information!

Posted by: MBrain | December 22, 2007 3:35 PM

Thanks for keeping me informed on NBS.

Posted by: linkingpro | February 13, 2008 1:03 PM

I agree, this should be taken very seriously. if so, it will save lifes.
//Siobhana
Baby Safety | Baby bouncer seat information

Posted by: siobhana | March 6, 2008 12:11 PM

Why would they want to destroy the samples. It's useful to keep.

Posted by: Body Detox | March 23, 2008 12:28 PM

The future potential for the misuse of genetic databases are huge.As I understand this...There are no current laws about how often and whom this information may be shared with.

Why not allow informed consent and let parents choose to "opt in" ?

Posted by: AG | March 30, 2008 6:00 PM

hi i comes rom indonesia. i think this is a useful blog.
bet regards from indonesia:)

Posted by: bari.psycho | April 3, 2008 1:51 PM

Nice Article.. thank you..

Posted by: seegatez | April 8, 2008 4:48 AM

I think blood sample still needed specially for parents, to know some hidden diseases that need to be detected right away.

Posted by: qupiq | April 17, 2008 4:42 AM

Really valuable information.
Thanks

Posted by: Anup Dahiya | April 22, 2008 1:25 PM

Destroy or not it's their to decide but note that the archives is an asset =]

Posted by: Josh | June 5, 2008 5:40 PM

Thanks for information! Great

Posted by: Tiger Balm | August 19, 2008 3:52 AM

I believe that parents should have and must have the last say, in the knowledge that the samples will be destroyed within 24 months.

Posted by: Alfred James | October 29, 2008 12:33 AM

Hey thanks for this great information

Posted by: 229tom | November 6, 2008 12:14 AM

This is a great article. I think it is a big mistake to destroy the NBS bloodspot archive. It is used to test for hidden diseases that need to treated right away. It has already saved hundreds of lives.

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