Does Shortness Need a Cure?
This past July, the U.S. Food and Drug Administration announced that Human growth hormone may now be prescribed to boost the height of short, but otherwise normal, children. Specifically, pediatric endocrinologists are permitted to prescribe HGH for children whose predicted adult height is below 4 feet 11 inches for women and 5 feet 3 inches for men. People with such heights are 2.25 standard deviations below the mean American height and constitute about 1.2 percent of the adult population. There are rough and ready ways to predict what a child's adult would likely be. It is estimated that some 400,000 American children might fit within these new medical guidelines. The average height for American men is 5 feet 9 inches; American women stand 5 feet 4 inches tall on average.
HGH has been used for decades to treat children who are growth hormone deficient. The new FDA ruling expands the permissible use of HGH to children who don't have a medically recognized cause for their short stature. In clinical trials, short children treated using HGH gained between 1 and 3 inches of additional height. The treatments involve shots six times per week over many years and cost between $10,000 and $30,000 annually. However, the price for HGH treatments is likely to fall considerably since the patents for it will run out in a few years.
Naturally, the FDA's ruling has raised some ethical concerns. University of Pennsylvania bioethicist Arthur L. Caplan told the Washington Post that he is concerned about the FDA approval. "I think it's dangerous when you take people who are normally short and say there is something wrong with them," Caplan said. "Whenever you take people on the low end of a distribution curve and say they have a disorder, you're starting down a slippery slope." (Actually, in this case, perhaps we're starting up a slippery slope.)
First, what does it mean to be "normally" short? The children who now fall within the new FDA guidelines could very well be experiencing growth syndromes that medical science has yet to identify. In fact, these cases are really not much different from those where HGH has been used to treat children with medically recognized disorders. In both cases the treatment addresses the "symptom" of being short—by helping the child to grow taller—rather than correcting the underlying problem.
Even the President's Bioethics Council hints that using HGH to treat children who are not within "the '95% envelope' on the appropriate height/age curve" might be appropriate. Since the children in this case are 1.2 percent of the relevant population, they are therefore well outside the "95 percent envelope" defining normality.
The issue of consent comes up in the context of using HGH to treat children. The problem is that for HGH treatments to be effective they must begin in childhood and adolescence. Of course, it is no news that some parents make decisions on the basis of considerations many of us might consider trivial or sometimes they even make decisions that turn out badly. But in general, unless there are compelling reasons to believe otherwise, it is reasonable to assume that most parents want what is best for their children. In the case of HGH treatments, the FDA panel heard lots of testimony from children who were grateful that their parents had sought out HGH treatments for them.
Still, why would anyone care whether or not he or she is short? Although evidence to support this notion is hard to find, it is widely believed that very short people in the United States experience discrimination over the course of their lives, from bullying on the school playgrounds to being passed over for job promotions. But even if it's not true, why not let people attempt to achieve the height they would prefer to be? As my former Reason colleague Virginia Postrel has noted, we need a different category than "disease" to describe anatomical conditions that individuals possess but don't like and want to change. As it is, people already resort to all kinds of body modifications, ranging from hair dying and hair transplants to teeth capping, tummy tucks, up to gender reassignment, to attain their preferred appearance.
But how far should we allow people to go? What other attributes should we allow people to "treat" in order to avoid being discriminated against? Dark skin color? Homosexuality? Obesity? On the face of it, these are hard and troubling questions.
However, the real problem is the phrasing of the questions—who are "we" to decide how other people should live? If people do not have liberty to make choices about their own bodies, what liberty do they have? A world in which each person is cherished, no matter their appearance, would be a better world than the one we live in. But again, who are "we" to say that people must be forced to endure discrimination and dissatisfaction in the here and now as we work toward the dawning of that better world?