Why a Bill Against Medical Experimentation on Minors is Necessary

Rep. Michele Bachmann (R-Minn.) explained the motivation behind H.R. 4989, known as Justina’s Law. “Sixteen months ago, Justina was a [competitive] figure skater. Today, she cannot stand, sit or walk on her own.” The bipartisan legislation aims to chop federal funds to “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.”

The proximate cause is the tragic saga of now-16-year-old Justina Pelletier. Both officials in Massachusetts and medical staff at Boston Children’s Hospital (BCH) are accused of sanctioning and conducting experimental research on Justina after removing her from parental custody. Justina’s ordeal occurred over the vigorous objections of both parents.

It could happen to any family. In February 2013, Justina had difficulty retaining food due to flu-like symptoms. Her parents, Lou and Linda Pelletier, were particularly concerned because she was being treated for a confirmed diagnosis of mitochondrial disease. A leading expert, Dr. Mark Korson, chief of Metabolic Services at Tufts Medical Center in Boston, advised taking Justina to the emergency room at BCH.There, a resident doctor changed her diagnosis to somatoform disorder, in which patients experience pain without a physical cause. Justina’s problem was shifted from a physical to a mental one. The diagnosis was confirmed by a BCH psychologist who was researching somatoform disorder under a National Institute of Health grant. But the Pelletiers refused to sign off on new treatment or to remove Justina from her current medication. They tried to transfer her to Tufts and back to the care of Korson. BCH called the Massachusetts Department of Children and Families (DCF) instead.