Is shortness a disease in search of a cure?
The National Institutes of Health has resumed recruiting healthy boys and girls ages 9 to 15 for experiments. Half will be injected thrice weekly for seven years with a genetically engineered human growth hormone; the other half will get a placebo.The controversial experiments had been on hold pending the report of an advisory committee. The committee reasoned, "Children and adults with extreme short stature may experience difficulty with physical aspects of the culture generally designed for individuals taller than themselves (e.g. driving a car). They may also be harmed by . . . prejudices resulting in stigmatization and impaired self-esteem."
The controversy over curing shortness gives us some idea what is in store from genetic engineering. At first blush, it would not seem to be too difficult to decide what medicine should seek to cure - what is sickness or disease and what is not.
Sickness and disease are more than mere biological concepts. Labeling something a disease has always had profound political, economic and social consequences. Notions of disease vary. The same condition may be considered diseased, immoral, distasteful or even criminal.
How does shortness measure up as a disease or condition to be subject to treatment?
For some time, doctors have been using a genetically engineered version of the growth stimulant produced naturally at the base of the brain to treat children who are not expected to grow more than 4 feet tall as adults. The new round of experiments about to get under way will include otherwise healthy children who would grow up to 5 feet, 6 inches as men or 5 feet as women.
The NIH experiment raises profound questions about the ends and limits of medicine.
Proponents of the experiment say it is designed to determine whether growth hormone makes a child grow taller or just faster. They say it is no more controversial than cosmetic surgery, breast implants or other medical interventions of surgical procedures designed to promote well being.
Critics, including the Physicians Committee for Responsible Medicine and the Foundation on Economic Trends, plan to seek a federal court injunction to stop the experiments.
Jeremy Rifkin, founder of the latter group and a longtime opponent of genetic engineering, believes NIH has no business experimenting on healthy children merely because they are victims of social discrimination.
It is not difficult to predict where unfettered consumer choice, peer pressure and vanity will lead us when parents can choose from a menu of characteristics for their children.
Society's built-in gender bias is reflected in the desire expressed for a firstborn son by four-fifths of prospective parents. These same parents will, no doubt, prefer children who are at least slightly taller than average. If all parents act on these desires, the average height will obviously skew upward.
If children are helped over what they or society perceive as a problem by seeking medical intervention, should you and I care? Yes.
The question of who deserves medical intervention is not merely of interest to the individual, the doctor or the therapist. Treating disease almost invariably involves third-party payers, private and governmental. We all pay when medicine brings an assortment of socially undesirable characteristics under the rubric of disease.
It is not merely Luddite anxiety that should give us pause about this experiment and the future it portends. Will certain skin colors be deemed a social disadvantage worthy of "treatment?"
Short people may bear the brunt of social stigma and discrimination, but searching for a drug to make them taller attacks the problem from the wrong direction. Being short is not a disease. Shortness does not need a cure; there are plenty of diseases that do.