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.