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Support Justina's Law

June 30, 2014 - Andrea Johnson
Foster children are not lab rats, but scientific researchers have apparently been using them as if they are. The research guidelines at Boston Children's Hospital, the hospital where 16-year-old Connecticut girl Justina Pelletier was held against her will for more than a year, are of particular interest. The guidelines at Boston Children's say that wards of the state can be used in research that presents minimal risk. Foster children can ALSO be included in research that presents greater than minimal risk with no direct benefit to the child. In such a case, the guidelines call for the child to have an advocate – one appointed by the research board, which sounds like a conflict of interest.

Now Rep. Michele Bachmann, R-Minn., Rep. Karen Bass, D-Calif., Rep. Tom Marino, R-Pa., and Rep. Jim McDermott, D-Wash., are sponsoring a bill that would prohibit federal funding for experimentation with greater than minimal risk that includes children who are wards of the state. The bill was referred to the House Committee on Energy and Commerce on June 26. This bill, which is nicknamed Justina's Law for Pelletier, should become law. It deserves bipartisan support in the Congress and support from every citizen in the United States. What happened to Justina must not be allowed to happen to anyone else.

Justina, the girl at the center of the controversy, finally returned home to her family earlier this month. Her parents claim that she was used in ongoing research at Boston Children's without their permission, as has happened to far too many other children who don't have such vociferous advocates. The saga started in February 2013 when Justina, who was being treated for a metabolic disorder called mitochondrial disease by doctors at Tufts, was taken to Boston Children's with flu symptoms. One of the doctors who evaluated her at Boston Children's was a doctor who is studying a psychiatric illness called somatoform illness. Conservative websites also claim that the psychologist has received funding under an NIH grant.

Doctors at Boston Children's decided that Justina's symptoms were psychiatric in nature and her parents had been overmedicating her. When the parents objected and tried to take Justina to another doctor for a second opinion, the hospital reported them for medical abuse. A judge ordered Justina held in a locked psychiatric ward at Children's Hospital for over a year and her visits with her parents and sisters were severely restricted. After 16 months of legal battles and negative publicity, the judge ordered that Justina could return home. Justina has not noticeably improved in the past year. She now uses a wheelchair and has lost ground educationally. If she was in fact part of any ongoing research on somatoform illness, it was not to her apparent benefit.


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