"Compulsory" testing

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"Compulsory" testing

Post by editor » Sun Jul 27, 2014 10:00 pm

This article from the Blaze
original link: http://www.theblaze.com/stories/2014/07 ... l-consent/


Parents Surprised to Learn What the State Has Had Stored on Children for the Last 23 Years Without Their Permission
Jul. 21, 2014 8:56am Liz Klimas

Up to 2.5 million cards with infant blood are stored in hundreds of boxes in an undisclosed warehouse in Indiana. The issue? Parents are just finding out about them.

For 23 years, until 2013 when parental consent to keep blood samples was required in the state, the Indiana Department of Health took blood samples at birth to conduct immediate screenings for certain disorders and kept them without parent permission.
(Photo caption) Hundreds of boxes store up to 2.5 million blood samples taken from infants since 1991 in Indiana. They were kept without parental consent but last year that practice changed. (Image source: WTHR-TV)
“It’s a surprise, a complete surprise to me. I had no idea about it,” one parent told WTHR-TV earlier this month when approached with the information.

“No, I was not aware,” another parent told the news station.

The state’s Genomics and Newborn Screening program is conducted by law to test for 47 conditions before the baby leaves the hospital or within one week for home births. The purpose is to catch diseases and conditions in order to recommend treatments as early as possible, if necessary.

“As of June 2013, parents/guardians of newborns indicate whether or not to allow their child’s [dried blood spot] to be made available for medical research purposes. If a parent/guardian chooses to have their child’s DBS saved, it will be stored and made available for medical research purposes for a period of three years and then destroyed,” the program’s website stated. “Although saved DBS, as of June 2013, will be available for medical research, no identifiable information about your baby will ever be released. If a parent/guardian indicates they do not want a baby’s DBS used for medical research, then the DBS is kept for 6 months to ensure additional screening is not necessary and then destroyed.

“If your baby was born before June 1, 2013, your baby’s DBS has not been made available for medical research,” the state reassured parents.
(Photo caption) Blood samples are taken from a newborn babies heel and used to detect various conditions or diseases that might require treatment. (Image source: WTHR-TV)
Even still though, Dr. Eric Meslin, director of the Indiana University School of Medicine’s Center for Bioethics, told WTHR that it wasn’t a good policy on the part of the state.

“I think it’s very legitimate for people to be concerned, to wonder what happened,” Meslin said. “I think it’s a natural human reaction. You’ve got something of mine and I didn’t know about it.”

“You need to ask permission,” he added

Watch WTHR-TV’s report about the revelation:

Indiana is not the only state collecting newborn blood samples and keeping them with or without permission from parents. In May, Minnesota passed a law that finally required parental consent to keep infant blood samples. Here’s more about what’s going on with this same practice around the country:
According to the Centers for Disease Control and Prevention, all babies in the U.S. are checked for certain medical conditions soon after birth using this method.

But an article in the journal for the American Academy of Pediatrics several years ago noted that many states do not have policies regarding retention of these blood samples: The review found that four states claim the samples as their own property; five states allow parents to request the samples be destroyed after testing; and six states require parental consent if the sample were to be used for other research. Only one state prohibits the newborn blood samples from being used for other research, while 18 states have not addressed the issue of retaining the samples at all.
At this point, Indiana is allowing parents who have had their children’s blood stored since 1991 without consent to fill out forms to either have it destroyed or explicitly saved for research. Even if it was saved though, WTHR pointed out, that improper storage over the years might render the sample unfit for research at this time.
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Re: "Compulsory" testing

Post by editor » Sun Jul 27, 2014 10:20 pm

When my son was born the hospital attempted to do the test on him mentioned in the above article. I refused.

Of course I had modified my admission contract so that I could refuse any service, as I show how to do in my book How to Survive Hospital Costs Without Insurance. So I was not bound to obey the hospital's directives.

I was repeatedly told the test was "required by State law." I simply replied, "I want to obey the law. Please show me the law, together with the implementing regulation that makes me a 'person required', and I will comply."

At one point my wife, son, and I were leaving the hospital. An important-looking woman who appeared to be a director told us we couldn't leave because we hadn't been discharged. I told her I had not waived my right to discharge myself, and we were leaving.

The nurse who had been the nicest to us asked me, begged me, if I would please bring my son back tomorrow for the test. Out of consideration to her, I said I wouldn't promise about the test, but I would bring my son back and we could discuss it.

The next day, I brought my son to the hospital. The receptionist slid the standard admission form across to me. I said, "I won't be needing that, I have my own contract," whereupon I signed the paper I had brought with me as she watched. I slid it across to her, and watched her face with amusement as she read the paper. Then she said, "I'll be right back," and she disappeared into the back for about fifteen minutes.

The offer-to-contract I had brought with me was quite different from the usual hospital admission form. This form had the following conditions, which I now paraphrase:
  • 1. I granted hospital the right to do the test, provided that it was understood that I was granting permission under duress with the understanding the test was required by State law, and that I was a person required. I specifically reserved my right to prosecute hospital employees for assault and battery, and to sue the hospital for civil damages, if it could be later determined that I was not in fact required.

    2. I did not agree to pay for the test.

    3. I did not waive liability in the event of any unforeseen consequences.
When the receptionist came back, she said she could not accept the terms of admission I had offered. I told her, "I have done as I promised, and bought my son back for this test, subject to these terms. I've honored my agreement." She said, "We can't do it under those terms."

I asked her, "I was told that submitting to this test was State law. What about that?" She replied, "Whoever told you that was misinformed."

The result-- We left and went home. My son's dried blood spot never existed, and is NOT sitting in a State file somewhere.
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