[Jolie]

Originally Posted by 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.

Mercy,

The difference between newborn screening "of old" and the current state of newborn screening is like night and day. My youngest is just 9. At the time she was born, her newborn screening consisted only of PKU, T4, and galactosemia, diseases which can have disastrous effects if not diagnosed early, and which all have effective treatments. Currently, some states test for dozens of diseases, many of which do not require immediate diagnosis or treatment to protect quality of life. And with the issue of keeping samples for later testing, there is really no limit as to the information that may be gleaned (and mis-used) in the future from one's newborn screening.

I think this is a perfect example of technology outpacing thoughtful protections for one's privacy. While the expansion of newborn screening was intended to improve the health of our population, it may well have the opposite effect if misuse of information and misuse of power (as in Omaha case) scare parents away from allowing the test to be done. I suspect that this couple chose a home birth in an effort to avoid the test altogether. What about the harm that will come to birthing mothers and their infants if they are so afraid of newborn screening that they refuse hospital care. It is beginning to sound a lot like the situation with drug abusing pregnant women who refuse medical care for fear of drug screening and reporting.

It may be time to go back to the old fashioned PKU, T4 and galactosemia, and forget the other "optional" testing.

[pickledpepperRN]

I am very clear with regard to an adults right to refuse healthcare or just one aspect like blood transfusions. But the line between a parents rights and a newborns right to healthcare is not so clear to me. The baby did not choose not to be tested.
Perhaps the testing for CF and other illnesses is to make the diagnosis early. Perhaps they could be postponed until done with parental permission during a later visit to the clinic or doctor.
I don't remember any such discussion about PKU testing 40 years ago.

I don't have the answers.

Tests saved our girl wrote on October 25, 2007 11:06 pm:

" I commend the state for performing such tests as a requirement...they save childrens lives..both physically and mentally...our baby was disagnosed with hypothyroidism from these test..and to save her fromo mental retardationo she only needs a pill a day...without the medicine she would be what use to be referred to as creatism. she now can have a normal active life. The march of dimes highly recommends these tests and they truly do save children's lives. "

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

[mercyteapot]

Never mind.

[HM2Viking]

Originally Posted by 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.

I can only agree. The thing that struck me from the article was that MN is in effect following best practice guidelines with its testing program. The dispute reminds me of objections to census participation. The census seals data for 75 years following each decennial count. I think that a reasonable compromise is to embargo test results for a similar period of time. The other workable compromise is to destroy negative test result records and samples. The other side is that after kids are treated for the identified disorder that the treatment plan is going to be part of their medical record.

I personally have to come down on the side of the public health argument. If the children suffer a disabling illness as a result of failure to detect illnesses it will cost the child and the family a lifetime of heartache. Society is stuck with a huge special education bill, SSDI and medical bills for a (potentially) preventable disability.

See:
Kathy Stagni knows firsthand what's at stake.

Her daughter, Melissa, was three days old when she fell into a coma. Doctors diagnosed proprionic acidemia, a rare shortage of amino acids for breaking down protein.

Melissa emerged from the coma with brain damage. Now 18, she has just graduated from high school in a special education program. She has an IQ of 60. (The average IQ is 100.)
...
For parents of a sick child, Stagni said, "privacy is the furthest thing from their mind."

http://www.startribune.com/1244/story/1541400-p2.html
Schleiss doesn't buy the privacy argument. "If you don't screen, that child's never going to be employable or insurable," he said.
http://www.startribune.com/1244/story/1541400-p2.html
Tara Madison remembers being offered a genetic test for cystic fibrosis when she was pregnant, which she refused. After all, nobody in her or her husband's families had the disease.
She said she also would have said no if she'd been asked about newborn screening for Ella.
"Every parent thinks: 'Not my child,'" she said. Now she thinks it shouldn't be optional.
http://www.startribune.com/1244/story/1541400-p2.html

I think that this really speaks to the need for legal clarification and patient education.

[Jolie]

Originally Posted by HM2Viking

I can only agree. The thing that struck me from the article was that MN is in effect following best practice guidelines with its testing program. The dispute reminds me of objections to census participation. The census seals data for 75 years following each decennial count. I think that a reasonable compromise is to embargo test results for a similar period of time. The other workable compromise is to destroy negative test result records and samples. The other side is that after kids are treated for the identified disorder that the treatment plan is going to be part of their medical record.

I personally have to come down on the side of the public health argument. If the children suffer a disabling illness as a result of failure to detect illnesses it will cost the child and the family a lifetime of heartache. Society is stuck with a huge special education bill, SSDI and medical bills for a (potentially) preventable disability.

See:
Kathy Stagni knows firsthand what's at stake.

Her daughter, Melissa, was three days old when she fell into a coma. Doctors diagnosed proprionic acidemia, a rare shortage of amino acids for breaking down protein.

Melissa emerged from the coma with brain damage. Now 18, she has just graduated from high school in a special education program. She has an IQ of 60. (The average IQ is 100.)
...
For parents of a sick child, Stagni said, "privacy is the furthest thing from their mind."

http://www.startribune.com/1244/story/1541400-p2.html
Schleiss doesn't buy the privacy argument. "If you don't screen, that child's never going to be employable or insurable," he said.
http://www.startribune.com/1244/story/1541400-p2.html
Tara Madison remembers being offered a genetic test for cystic fibrosis when she was pregnant, which she refused. After all, nobody in her or her husband's families had the disease.
She said she also would have said no if she'd been asked about newborn screening for Ella.
"Every parent thinks: 'Not my child,'" she said. Now she thinks it shouldn't be optional.
http://www.startribune.com/1244/story/1541400-p2.html

I think that this really speaks to the need for legal clarification and patient education.

Viking, my specialty is OB and NICU. I don't argue the benefits of these tests, but I do support a parent's right to refuse them. The heavy-handed tactics taken in the Omaha case will only make parents more suspicious of authorities' motives, and the potential loss of privacy that may haunt a person for his/her entire lifetime.

The Stagni case you cite is tragic, but that child WAS tested at birth, as I understand. Newborn screening results are not usually immediately available, as specimens are often sent out of state for testing. It may be 2 weeks before results are available. That was obviously too late for this child, and pinpoints a flaw in the testing system.

The "benefit" of testing for an ever-expanding list of diseases (some of which do not have an immediate impact on a newborn's health) may create an unintended backlash of parents refusing testing altogether. Few people objected when testing was limited to the "biggies" such as PKU and thyroid. When "advances" are made in public health, it is important to consider their unintended consequences. In this case, public health officials need to evaluate whether the change made to newborn screening has had a positive or negative impact on the overall health of the community, and how to respect parents with conscientious objections.

[morte]

Darwin

[HM2Viking]

What was ignored was this comment:

I can only agree. The thing that struck me from the article was that MN is in effect following best practice guidelines with its testing program. The dispute reminds me of objections to census participation. The census seals data for 75 years following each decennial count. I think that a reasonable compromise is to embargo test results for a similar period of time. The other workable compromise is to destroy negative test result records and samples. The other side is that after kids are treated for the identified disorder that the treatment plan is going to be part of their medical record.

and:

I think that this really speaks to the need for legal clarification and patient education.

This comment was posted by a friend of mine in a reaction section to the article (Name redacted to protect privacy):

Speaking from direct experience: Minnesota’s newborn screening aboslutely, without-a-doubt, saved my child’s life. On October 28th, 2006 he was born and he seemed healthy and happy. Two days after we had all left the hospital and were settling back in at home, we received a call from our doctor that the newborn screening had picked up on something and that we need to come in immediately. We quickly went in, and she explained that the test had indicated our son was born with “Congenital Adrenal Hyperplasia” and that we were to head directly to the Mayo Clinic in Rochester for evaluation. In Rochester, after further blood testing they found that he did indeed have the genetic disorder, and that he had already begun to suffer from adrenal crisis. (His body was dangerously deficient in sodium and cortisol.) Had he not had the newborn screening, he would have slipped into a coma and died before anyone would have known what was wrong. I’m one of the biggest privacy advocates you could imagine, but to view this program as an invasion of privacy borders on ridiculous. Take off the tinfoil hat and concentrate on the ACTUAL abuses of privacy out there. (See: Bush et al.)

http://www.startribune.com/blogs/comments/?p=54#respond

The testing program works in MN. The disorder (in this case) was identified within 2 days of birth. This friend of mine also made an incredibly simple suggestion to address some of these issues. "Deidentify the data and collect only in group aggregates."

As to the Nebraska case the article identifies a flaw in state law. There was no religious exemption built into the law for Nebraska. The easy fix is to simply amend the law in Nebraska to include this exemption. (Although I think that it should be an affirmative opt out.)

[HM2Viking]

One other comment from the STRIB:

I am not sure what all the hoopla is about. After researching for 5 minutes I found a form on the MDH (Minnesota Department of Health) website that gives the parent or guardian the right to “Parental Refusal of Newborn Screening” form.
The website lays out all the tests that are being completed and why they store the data. There is another form that allows for the data to be destroyed after 24 months from testing.

[HM2Viking]

Here is a link to a newborn screening website:

http://www.savebabies.org/familystories.php

[mercyteapot]

Originally Posted by HM2Viking

As to the omaha case the article identifies a flaw in state law. There was no religious exemption built into the law for Omaha. The easy fix is to simply amend the law in Nebraska to include this exemption. (Although I think that it should be an affirmative opt out.)

I also don't understand the rationale that because the rights of one family were violated, however aggregiously, that these tests shouldn't be provided to thousands, and eventually millions, of others.