Dwarfism, Chemical Limb Lengthening, and Informed Consent

According to a recent article in the popular press, a California based biotech firm, BioMarin Pharmaceuticals, has completed Phase 2 of a clinical trial for a drug that would partially suppress the expression of the Achondroplasia gene in a child’s long bones. The results of this phase of the study show children with Achondroplasia are able to gain about 2 centimeters of height per year by undergoing frequent injections of the drug and complications of the intervention are described as “mild to moderate.”

Considering the context of Little People of America’s 60 year history and 7,000 members, it should not be terribly surprising that this attempt to develop a so-called treatment for the most common form of dwarfism has stirred up a backlash that is nearly as passionate as Deaf culture’s initial response to the cochlear implant. However, these complex identity politics of the dwarfism community probably won’t produce arguments that are persuasive to most average-stature parents. After all, Dr. Hank Fuchs, who serves as BioMarin’s Chief Medical Officer, has explained the supposed motivations of the study...