Herr Doktor Mengele, rufen Sie Ihren Anwalt! Jemand plagiieren Ihre Ideen. No, we’re not trying to invoke Josef Mengele from beyond the grave. But if he ever worried about scientific plagiarism against himself, he might want to get legal advice. CNAV today received a lead on what might be an abuse of power to dwarf anything Josef Mengele or his superiors did. It involves legally kidnapping children with rare genetic diseases to do genetic research on them without parental consent. And whether these specific allegations are true or not, someone ought to change the law that lets this happen, and fast.

Kayla and Hannah Diegel

Kayla and Hannah Diegel. From HealthImpacts.com

At 3:15 p.m. EDT, activists advocating for Kayla and Hannah Diegel, aged 10 and 12, sent CNAV a link to a Facebook page titled “A Miracle for Two Sisters.” The page includes photographs of Kayla and Hanna Diegel and a description of their story. They suffer from congenital disorder of glycosylation (CDG). This is a disorder of mitochondria, the “power plants” of living cells. Justina Pelletier, the Connecticut girl who languished for 16 months in a Boston hospital after the Massachusetts child welfare office made her a ward of the Commonwealth, also has a mitochondrial disorder.

The Translational Genomics Research Institute (TGen) and the National Human Genome Research Institute (NHGRI) both have an interest in mitochondrial disorders. The allegation describes these as a highly lucrative area of genetic research. And having two little girls with the same rare disease is like a lottery win for workers in genetic research.

The Diegels involved TGen by having one of their physicians see the older daughter, Hannah, on December 2, 2013. The site Health Impact News repeats the story and the time line. That time line runs from December 2013 through August 1 2014.

Briefly: the two girls start seeing physicians from TGen on December 2. On December 24, their primary doctors instruct the parents to take the girls to Phoenix Children’s Hospital Special Needs Clinic. They start coming to the clinic on January 10. Beginning then, different doctors take over the girls’ care. One of them: Dr. Philip James, recently transferred to Phoenix from Boston Children’s Hospital (Justina Pelletier’s hospital). During this time, someone applies the diagnosis of CDG.

This correspondent remembers his medical training and experience as a bio-analytical lab director. To bounce a family from one doctor to another, and seemingly two changes of physicians in a month, is highly unorthodox. Every time Dr. A transfers care to Dr. B, Dr. A must write a “transfer note,” and Dr. B must write a “transfer acceptance note.” This is how both doctors show how well Dr. A told Dr. B what is happening with the patient. Doctors avoid confusion this way. But any doctor who transfers care, risks confusion with the transfer. The more transfers happen, the greater risk they take of confusion. So they wouldn’t do it without some compelling reason.

CDG often paralyzes the stomach. So both girls needed feeding tubes. Things turned nasty when a Dr. Siaw, a gastroenterologist, did not treat those girls appropriately. Among other episodes, one of the girls had a bowel impaction so severe that waste products were moving backward through the GI tract. Dr. Siaw was supervising the treatment of this condition at home by two nurses, instead of in the hospital.

The parents decided then to get another doctor to care for the girls. Shortly after that, this doctor signed the complaint to the Arizona Department of Child Safety, accusing the parents of child abuse and medical neglect. This happened on April 8 and 10. Four months later, Mrs. Diegel learned that TGen and NHGRI are running a trial of a new drug for treating CDG. In other words, Arizona DCS is party to genetic research on her daughters without her consent and even without notice.

See also these links from friends of the Diegels: a Twitter account, two fund–raising pages, and a special page by the Arizona Family Rights Project. Until this summer, the Diegels had a “Justice for the Sisters” page of their own. That domain now opens to a blank page. The parents took that down – by order of a court.

A parallel case

While this was happening, young Isaiah Rider, age 17, also became a ward of the State of Illinois while a patient at Lurie Children’s Hospital in Chicago. This although his parents live in Kansas City. His case, at least, is going better: he is back in Kansas City, but is still a ward of the State of Illinois. (The local Fox News affiliate has more.) His was another case of genetic research on a “ward of the State.”

The stakes in genetic research

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Genetic research thrives on cases of rare diseases. Any medical student soon learns certain names of famous lay people with such rarities, like the Joseph family, and the Amish clan suffering from the Ellis-Van Creveld Syndrome. They also learn the name of Henrietta Lacks, a woman with cervical cancer whose cells started growing on their own (the HeLa cell line). All these are famous names in genetic research, basic and clinical.

Tellingly, the family of Henrietta Lacks won a settlement, citing exploitation by Henrietta Lacks’ original doctors.

But since the NHGRI finished the Human Genome Project, they realized at once the money they could make by collaborating with major drug companies for drugs to treat genetic disorders. The rarity of these disorders creates the problem: one normally must get the consent of the patient, or the patient’s guardians, before doing such research. But that does not apply to a ward of the State. The Code of Federal Regulations says a researcher needs the consent of the patient or his representative. (See 45 CFR 116.) And when a child is a ward of the State, the State, not the parents, “represent” the child.

The American people wondered why the Massachusetts Department of Children and Families took Justina Pelletier away from her parents and left her to language in Boston Children’s Hospital. Especially since the physicians there were not treating her appropriately. In fact, she nearly died. But if they were trying a new drug, instead of the tried-and-true methods her doctors at Tufts New England Medical Center had used, we now know why the BCH doctors so treated her.

Now consider Justina Pelletier’s case with those of Isaiah Rider and now Kayla and Hannah Diegel. Consider also that one doctor involved himself in Justina Pelletier’s case and those of Kayla and Hannah Diegel. Now the crooked genetic research connection becomes clear.

The late Ian Fleming memorably said, in his novel Goldfinger:

Once is happenstance, twice is coincidence, and the third time it’s enemy action.

We now see clear evidence of collusion, among the National Human Genome Research Institute, the Translational Genomics Research Institute, and children’s hospitals and Child Protective Service offices (or their equivalents) across the country. The goal of this collusion: to abduct children who happen to have rare diseases, so favored drug companies can do genetic research on them without their parents’ consent and presumably without compensation. These genetic research workers now repeat the exploitative treatment of Henrietta Lacks on a large and disgusting scale. This is a travesty of what is supposed to be a humane art, the art of medicine.

This is more than unconstitutional. It would horrify Hippocrates of Cos. He bound his students with a memorable oath to curb abuses similar in principle to this.

I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.

And:

Into whatever houses I enter, I will go into them for the benefit of the sick, and will abstain from every voluntary act of mischief and corruption.

Wilfully trumping up charges of child abuse and medical neglect against innocent parents, in aid of genetic research or for any other reason, is such a voluntary act of government mischief. Any doctor party to that is guilty of a similar voluntary act of medical mischief and corruption. And as such he breaks his oath.

What must happen

First, Governor Jan Brewer of Arizona should intervene now and free Kayla and Hannah Diegel from all involvement by the Department of Child Safety and Phoenix Children’s Hospital.

Second, Congress should consider a bill forbidding any such child-welfare office to consent to genetic research, or any other kind of medical research, on any of its wards, without first going to a judge, and even then letting the judge appoint a guardian ad litem to represent the child against the office in this matter.

Third, the United States Senate must refuse to ratify the United Nations Convention on the Rights of the Child. That convention would create an international child-welfare office. That office might abuse children routinely for genetic research or other research in this way, with no one to call their power to account.

Update

CNAV received this e-mail, having a time stamp of 4 October 2014 12:22 a.m. EDT purporting to come directly from Kayla and Hanna Diegel’s mother:

Dear Editor,

In order to avoid contempt charges and possible jail time, as the mother, for having had any of my daughters information displayed throughout the internet.  I have to follow the courts orders to contact any and all parties who are displaying information about my daughters case (Hannah and Kayla Diegel) to the public and ask them to remove it.

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Sincerely,  Melissa Diegel

Close examination of the source code for the above suggests the letter is authentic. The headers say it comes from the address justiceforthesisters@gmail.com.

Melissa Diegel may consider her duty to the court, if that duty be legitimate, discharged: CNAV is a “party…displaying information about [the] case [of Hannah and Kayla Diegel],” and she contacted us.

But we definitely refuse to remove this article. In so refusing we follow the lead of Health Impact News and of the owner-administrators of the Facebook page that we and Health Impact News each cited as our source. We shall assume for the moment that the address justiceforthesisters@gmail.com authentically belongs to Melissa Diegel and she is who the e-mail says she is. But we also believe she is acting under duress in communicating with us as she did. We will not remove or hide the story without a direct order from a court so to act. And when we receive such an order, we shall consider our legal and Constitutional options.

We shall so inform Governor Jan Brewer of Arizona at this contact address, and fully intend to retain counsel when, as, and if necessary.

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