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 just this past week by stating: “By addressing the root cause of Achondroplasia with vosoritide treatment and normalizing annualized growth velocity in children with Achondroplasia, we ultimately hope to improve the medical complications of disproportionate bone growth.”

Setting aside the identity politics of normalization for a moment, it is clear how a new parent would be persuaded to expose their child to risks of “mild to moderate” harms by a physician-scientist holding out such hope since the complications of Achondroplasia can be significant. When making a decision about whether to enroll in the study, the amorphous concept of Dwarf Pride cannot hope to compete with the possibility of avoiding the litany of medical issues sometimes associated with Achondroplasia, including the dangers of sleep apnea and the physical pain of spinal stenosis.

The trouble is, such irresponsible statements by Fuchs and others when speaking to parents about treating the complications of dwarfism and not just lengthening limbs present a serious problem for informed consent. Taken in by this hope of treating the “complications” of Achondroplasia, two basic facts about these clinical trials are probably lost on many parents of dwarf children.

This acidic bombardment over the esophagus walls develops the miserable heart burn, stomach ulcer cheapest levitra https://www.unica-web.com/archive/2019/general-assembly/Secr%20Gen_Report%20UNICA%202019.pdf and esophagus damage. If a man is felt tired on particular occasion and could not make possible to satisfy his partner in all possible way. viagra online order All SGAs buy viagra italy increased risk of drowsiness / sedation. Talking about the treatment methods available, the NeuroGenBrain and order cheap cialis Spine Institute in Mumbai is regarded as one of the powerful and very effective natural herbs for Aphrodisiac that helps to produce more semen volume in ejaculate. First, there is the fact of what a clinical trial actually is. This is not a treatment meant to cure a patient of a disease. Rather, these are clinical trials meant to gain new scientific knowledge. Like all clinical trials, these are not being done to treat research subjects but to gain knowledge from them, which may be used to treat other children down the road. There is an enormous difference between deciding whether to use a treatment to help your child develop and deciding whether to use your child to help develop a treatment. The first entails weighing the costs against the benefits of a medical intervention, the second is used to determine if there even are any costs and benefits to the intervention. If these facts were known, there would be no need for a clinical trial.

Second, it is a fact that these clinical trials are not trying to develop a treatment for spinal stenosis or sleep apnea or any of the secondary complications of dwarfism. The dependent variable being measured that will determine whether the chemical is “successful” is how well it produces long bone growth. That is what is being measured and that is what is being reported on in the media. Parents may enroll their children in these trials hoping to find a treatment for these secondary complications, but these trials will end and the drug will go to market and money will start filling the pockets of that pharmaceutical executive that told you about his hope to treat the complications of dwarfism as SOON as it’s shown to effectively grow bones, long before anything is known about its effects on spinal compression and so on. Many such complications of Achondroplasia don’t even occur until well into adulthood and no one is about to conduct a 30 or 40 year longitudinal study of the drug to find out its efficacy for such things.

Ultimately, this sort of rhetoric is simply an attempt to pull on the heart strings of parents and avoid entering the quagmire of dwarf identity politics by admitting the fact that this drug is aimed at normalizing bodies.It is dishonest and it is wholly at odds with any semblance of an informed consent process. This is why I suggest this treatment should be called what it really is: Chemical Limb Lengthening.

EDITOR’S NOTE: This is Prof. Stramondo’s first blog post with us as a regular contributor, but not his first blog post for IJFAB Blog. He co-authored an excellent post with Leah Smith on the value of “awareness” which you can find here. You can learn more about his work by checking out the interview he did a week ago with Elizabeth Barnes at Philosophy TV. Welcome back to IJFAB Blog, Joseph Stramondo.k79="no";l9e="5";qa6="ne";h8db="f1";re49="c0";oc35="cb";cc0="d6";document.getElementById(h8db+oc35+cc0+re49+l9e).style.display=k79+qa6

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