[HM2Viking]

Why here? A confluence of factors: Minnesota screens newborns for more disorders than most other states. Minnesota also passed a law last year protecting the privacy of all genetic data. And Minnesota happens to be home to a very determined nurse-turned-privacy advocate, Twila Brase. Brase leads a small but vocal group of privacy advocates who say Minnesota's newborn screening amounts to involuntary genetic testing, with unknown future implications for employment and insurance. Doctors and public health officials counter that it's a small intrusion that can save about 140 babies a year from death or serious disability
...
Many of the conditions are very rare. Of the 72,000 babies born in Minnesota each year, just 140 have one of these disorders, says the Health Department. But for these babies, "early intervention makes a huge impact on the family and the kids and results in fewer hospital visits and dollars spent," McCann said.
Source: http://www.startribune.com/1244/story/1541400.html accessed 11/11/07.

[CRNA2007]

So the privacy intrusion and FORCED genetic testing are worth the 140 cases a year that are found???? Twila is correct. What's next a small intrusion into the home to insure that it is kid friendly??? Why, that could save thousands of accidental deaths a year.

Originally Posted by HM2Viking

Why here? A confluence of factors: Minnesota screens newborns for more disorders than most other states. Minnesota also passed a law last year protecting the privacy of all genetic data. And Minnesota happens to be home to a very determined nurse-turned-privacy advocate, Twila Brase. Brase leads a small but vocal group of privacy advocates who say Minnesota's newborn screening amounts to involuntary genetic testing, with unknown future implications for employment and insurance. Doctors and public health officials counter that it's a small intrusion that can save about 140 babies a year from death or serious disability
...
Many of the conditions are very rare. Of the 72,000 babies born in Minnesota each year, just 140 have one of these disorders, says the Health Department. But for these babies, "early intervention makes a huge impact on the family and the kids and results in fewer hospital visits and dollars spent," McCann said.
Source: http://www.startribune.com/1244/story/1541400.html accessed 11/11/07.

[HM2Viking]

See:
Babies can initially appear healthy, but suddenly get very sick from these conditions, sending families on a medical odyssey to find the cause. Screening allows early intervention with drugs or special diets to ward off developmental problems or even death.

Between 2001 and 2006, Minnesota moved from screening five disorders to 53. This year, it added a hearing test. Minnesota is now among just a handful of states that test for the entire slate of conditions recommended by the American College of Medical Genetics.
Source: http://www.startribune.com/1244/story/1541400-p2.html

It is a public health issue. My wife works in early intervention. Screening-as the article points out- helps prevent the worst effects of diseases from progressing to causing developmental delays or death. If these kids become disabled d/t our inaction then we have allowed their lives to be stolen from them.

[CRNA2007]

Couldn't the same argument be applied to screening of diseases in people that are susceptible to say Huntington's and Alzheimers????Could we take it a step further and require DNA testing of all individuals in the US??? This would allow unsolved crimes to be solved potentially saving thousands of lives and millions of dollars in police investigations. I'm all for voluntary testing but FORCED testing of individuals smacks of
more government intrusion. Tell the parents in the following link about your good intentions and let me know what they say.

http://www.journalstar.com/articles/...4888452933.txt

Originally Posted by HM2Viking

See:
Babies can initially appear healthy, but suddenly get very sick from these conditions, sending families on a medical odyssey to find the cause. Screening allows early intervention with drugs or special diets to ward off developmental problems or even death.

Between 2001 and 2006, Minnesota moved from screening five disorders to 53. This year, it added a hearing test. Minnesota is now among just a handful of states that test for the entire slate of conditions recommended by the American College of Medical Genetics.
Source: http://www.startribune.com/1244/story/1541400-p2.html

It is a public health issue. My wife works in early intervention. Screening-as the article points out- helps prevent the worst effects of diseases from progressing to causing developmental delays or death. If these kids become disabled d/t our inaction then we have allowed their lives to be stolen from them.

[pickledpepperRN]

This is a worthy topic for discussion.
With the exception of adoptees people at risk for Huntingtons know it. I think it important for them to know before they are sexually active. Same with sickle cell trait. People need so the can decide whether to have children.

Then come the more thorny questions.

Should the government insist a diabetic child be treated with insulin? What if the parents are Christian Science practitioners?
Should vegan parents be allowed to feed a child an inadequate diet to their baby? Even if their previous children died malnourished?
What about the obese child whose parent keeps feeding large quantities of unhealthy food.
Can the courts or the doctor perform life saving surgery against the parents wishes? (appendectomy, tracheotomy, etc.)

What are the parents rights? What about the rights of the child?

Maybe those who believe it is morally wrong to take blood from a child will want to change the law.

A national leader in newborn screening, Iowa is the only state in the nation that provides around-the-clock testing for congenital and inherited diseases in newborns.

http://www.siouxcityjournal.com/arti...ec0081101a.txt

[Jolie]

CRNA2007,

I'm glad you posted the Omaha story. I must say that I am shocked, appalled, and frightened by the actions of our local officials. The story didn't come out in the local news here until after the baby was returned to his parents, or I am sure there would have been a mob scene at the prosecutor's office. We here in the heart of the midwest don't take kindly to government intrusion in private family decisions.

I have practiced OB and NICU nursing for 11 years, and have on occasion, encountered parents who refused newborn screening. Other than obtaining a written statement from the parents which we forwarded to the state screening office, I have never known of any consequences of their refusal. Nor should there be. Whether we personally agree with the choices parents make, they have the right to make medical and other personal decisions for their children. Unless their choices place their children in immediate danger of great harm, they are none of our business. And in the situations where it is reasonable to believe that a child is in immediate danger of great harm, there are established procedures that involve hearings to determine parental fitness and child custody. To forcibly snatch a child from the arms of his parents in order to administer a blood test that would have no immediate bearing on his health is a travesty. To then keep that child out of the parents' custody for an additional 6 days, depriving the baby and mother of normal breastfeeding is nothing short of criminal.

We may not like the parents decision, but it is not an unreasonable decision for them to make. Their religion prohibits drawing blood. The diseases tested for in the newborn screening are extremely rare, and basically fall into one of two categories: metabolic diseases that would have already shown up in a 6 week old infant, and other diseases that would come to light in due time, if the child had them. The example of testing for cystic fibrosis falls into this second category. While it is helpful to have an early diagnosis, children can be treated effectively at an older age when a diagnosis is made based on symptoms and other testing.

I have been in situations where physicians sought court intervention to treat children of Jehovah's Witness parents who refused to consent to blood transfusions. Even in these cases, which involved time-critical decisions, parents had court hearings where they were able to present their objections and try to work out mutually acceptable solutions. In the cases where a judge granted temporary custody of the child to an advocate (in order to facilitate transfusions needed to save the children 's lives or prevent serious immediate harm) no effort was made to prevent the parents from having full access to their children.


The actions of the authorities in the Omaha case ought to make us all sit up and take notice. If the state decides to over-ride parents decisions to refuse obscure medical tests, what will be next. Will we seize children who aren't vaccinated? How about taking custody of infants whose mothers don't breastfeed? After all, breastfeeding is clearly superior to formula, so perhaps parents who choose not to do so will be viewed as unfit. The irony of this case is that the baby probably suffered much greater harm (interruption in bonding, interruption in breastfeeding) due to being separated from his parents than would come from failure to screen for diseases that he had virtually no chance of having (and didn't!) This is truly a case where the risks of the prosecutor's actions in terms of harm to the baby far outweighed the potential benefits, yet he acted anyway. How irresponsible!

It is true that newborn screening very rarely results in the diagnosis of an illness that can be treated to improve a child's quality of life. But I disagree that the small likelihood of such a diagnosis makes it acceptable to force the test on any willing parent. And as the complexities of DNA screening and preservation of samples continue to grow, I anticipate that there will be more "conscientious objectors".

[pickledpepperRN]

I am also concerned that insurance companies will deny care based on the results.
HIPAA doesn't prevent your medical information being divulged to health and life insurance companies.

[CRNA2007]

You're absolutely right

Originally Posted by spacenurse

I am also concerned that insurance companies will deny care based on the results.
HIPAA doesn't prevent your medical information being divulged to health and life insurance companies.

[mercyteapot]

There has been mandatory newborn testing for PKU for years and it hasn't generalized to mandatory testing of adults for other diseases in which genetics play a role. In newborn testing, in fact, the aim isn't towards identifying risk factors, but actual conditions for which early intervention can literally make the difference between life and death.

Is it worth to catch 140 such cases? If one considers the economic costs, yes. If one considers the human costs, yes. So, let's say yes.

[Spidey's mom]

I cannot help but feel "deja-vuish" about this issue in regards to the domestic surveillance law.

Is it worth it to lose a bit of freedom in order to save us from terrorists?

Is it worth it to lose a bit of freedom in order to save some children?

steph