'Justina’s Law' Would Protect Wards of the State From Being Used as Medical Guinea Pigs

Abigail Wilkinson | July 21, 2014 | 12:48pm EDT
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Lou Pelletier carries his 16-year-old daughter, Justina, into the family's West Hartford, CT home after winning a 16-month legal battle with child welfare officials in Massachusetts. (Liberty Counsel)

(CNSNews.com) --  Justina Pelletier, the Connecticut teenager who was confined to the psychiatric ward of a Boston hospital without her family’s consent for nearly a year, recalled her ordeal at a news conference on Capitol Hill Thursday to promote a bill bearing her name.

“Justina’s Law,” introduced last month by Rep. Michele Bachmann (R-MN), would protect wards of the state from being used as human guinea pigs by medical researchers.

“What they did was terrible to me, and what they did to my family. . .I just don’t want it to happen ever, ever again, to anyone else,” Justina said.

Her father, Lou Pelletier, said that a minor declared a ward of the state can be used for medical research. “They can do any research they want on them,” he said, adding that “the same thing is happening at every single children’s hospital in this country.”

The bill, which would prevent non-therapeutic medical experimentation on such children, was co-sponsored by Bachmann’s fellow co-chairs of the Foster Youth Caucus: Reps. Karen Bass (D-CA), Tom Marino (R-PA), and Jim McDermott (D-WA).

H.R. 4989 would “prohibit federal funding of any treatment or research in which a ward of the State is subjected to greater than minimal risk to the individual’s health with no or minimal prospect of direct benefit.”

“We specifically believe there were elements of research done” on Justina during the 16-month legal struggle between Boston Children’s Hospital (BCH) and her family, Rev. Patrick Mahoney told CNSNews.com. Mahoney is the director of the Christian Defense Coalition and a spokesperson for the Pelletier family.

“We asked Governor [Deval] Patrick, we asked [Massachusetts] HHS Secretary [John]  Polanowicz, we asked the new DCF Commissioner [Erin] Deveney if Justina was part of a research project. They never denied it, they never said yes. They wouldn’t answer it. So I think that’s something that, should there be any further legal action, that that will be unearthed,” Mahoney said.

Sixteen months ago, Justina had been receiving treatment for mitochondrial disease at Tufts Medical Center in Boston. Her specialist at Tufts, Dr. Mark Korson, referred the Pelletiers to Dr. Alex Flores, a gastroenterologist at BCH, after Justina displayed severe flu-symptoms.

At BCH, Justina’s diagnosis was changed from mitochondrial disease to somatoform disorder, a mental illness which produces physical symptoms, by a doctor only seven months out of medical school.

Without consulting any other physicians, the somatoform diagnosis was confirmed by Dr. Simona Bujoreanu after a 25-minute examination. Dr. Bujoreanu is currently researching somatoform disorder under a grant from the National Institutes of Health (NIH), according to Liberty Counsel, which represented the Pelletier family.

When the Pelletier family refused to sign a plan that would have removed Justina from treatment for mitochondrial disease without a second opinion on the somatoform diagnosis, they were accused of medical child abuse.

Justina was declared a ward of the state, and she remained in the psych ward of BCH for more than a year. She was only allowed to see her parents one hour per week, and was denied educational and religious services during her stay at BCH.

"Her health not only failed to improve after separation from her parents, but it actually deteriorated significantly. Some physicians even stated that Justina’s life was put at risk under the new treatment," Liberty Counsel stated.

Justina was “a normal teenager” when she went to BCH. “After 16 months of being held prisoner of the State of Massachusetts at the behest” of BCH, she is now “confined to a wheelchair, has no measurable body strength, has indications of sepsis poisoning on her abdomen, and her hair is falling out,” the group said.

On June 18, after an extended legal battle, Justina was finally released from BCH and returned home to her family in Connecticut.

Justina Pelletier's parents, Linda (second from left) and Lou (second from right) at a June 10, 2014 press conference shortly  before regaining custody of their daughter. (AP photo)

“Sixteen months ago, Justina was a figure skater. Today, she cannot stand, sit, or walk on her own,” Rep. Bachmann said in a statement on “Justina’s Law.”

“Whether it is one child or thousands, it is our duty to guarantee that children are kept safe from harm while in the custody of their respective states,” Bachmann said.

“Not all these children have families like the Pelletiers willing or able to advocate on their behalf. . .it is unconscionable what happened to Justina, and we must do all we can to prevent it from ever happening again. Removing federal funding from such experimentation is an important first step,” she added.

“No child. . .should be subject to medical experimentation under the legal designation as ward of the state,”said Rep. Marino.

According to the BCH website, “Boston Children’s Hospital is home to the world’s largest research enterprise based at a pediatric hospital.” BCH receives “$225 million in annual funding, including more federal funding than any other pediatric facility.”

The hospital’s “Clinical Investigation Policy and Procedure Manual” states that “children who are wards of the state may be included in research that presents minimal risk or greater than minimal risk with a prospect of direct benefit.”

However, if the research is “related to their status as wards” or “conducted in schools, camps, hospitals, institutions, or similar settings in which the majority of children involved as participants are not wards,” a child who is a ward of the state might be included in medical research that “presents greater than minimal risk with no prospect of direct benefit.”

When such research is conducted, the ward is appointed an experienced advocate who is not involved in the research. Detailed information must also be presented to the Massachusetts Department of Children and Family’s Research Proposal Review Committee.

Similar guidelines exist at the Duke University Health System and at Johns Hopkins, which parallel procedures set forth by the U.S. Department of Health and Human Services.

“We just thought that was a really unethical standard and that when we’re dealing with children and especially foster kids, who may or may not have an advocate, to treat them like human lab rats is just unthinkable,” Mark Trammell, legal director of the Liberty Center for Law and Policy, a partnership between Liberty University School of Law and Liberty Counsel, told CNSNews.com.

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