Genetic Crossroads

The intersection of biotechnology, reproduction and society

Normal, or Better Than Normal - at a High Cost

A cautionary tale about medical manipulations to make children "normal."

The vast majority of children who feel they are too tall or too short - or whose parents feel that way - have no medical problem. To be sure, some kids above or below "normal" height endure schoolmates who bully, mock, or exclude them; parents who pressure or infantilize them; and employers who underpay or overlook them. Their suffering can be considerable, but their condition is entirely psychological and social.

Normal at Any Cost: Tall Girls, Short Boys and the Medical Industry's Quest to Manipulate Height is a gripping account of efforts over the past 50 years to "fix" children's height with hormones and other drugs. Authors Susan Cohen and Christine Cosgrove give us solid reporting, rich detail and human stories about this ongoing experiment.

Some of the medical interventions into height have gone bad. From the 1950s to the 1980s - before Title IX invited girls to play basketball and volleyball, before fashions and fashion models changed, before Michelle Obama became First Lady - thousands of girls "at risk" of winding up tall were dosed with huge amounts of DES (diethylstilbestrol) and other estrogenic hormones to accelerate puberty and thus stop their growth. Though some girls and parents still seek drugs to prevent tallness, their numbers are much reduced, especially in the United States.

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Unfortunately, the girls who were treated decades ago have never been properly followed up. But in recent years, they have begun to find each other on the Internet and compare their stories and health histories. It turns out that many hated the pills and the extra emphasis on their height, and that as adults they have experienced higher than average rates of reproductive problems, including infertility, ovarian cysts, endometriosis, and miscarriages.

Occasionally, height-fixing treatments have gone really bad. Beginning in the early 1960s, pediatric endocrinologists treated children - mostly boys - for short stature using human growth hormone harvested from the pituitary glands of cadavers. About 200, most of them in France, contracted "mad cow" (Creutzfeldt-Jakob) disease and died as a result.

In the mid-1980s, the budding biotech industry began producing synthetic growth hormone in abundant amounts, and pouring large sums of marketing money into defining shortness as a disease - thereby increasing their sales and profits by bolstering the stigma whose effects their product were said to mitigate. Doctors, some with the best of intentions and some with fat contributions from biotech companies, continue to convince (or cooperate with) worried parents to give children expensive experimental treatments whose effectiveness remains unproven.

Pediatricians still can't reliably predict the height that the short children brought to them would reach without intervention. Children who take injections of synthetic human growth hormone - often several times a week for years at a cost of a hundred thousand dollars - usually do grow, but it can't be determined whether any of those additional inches were produced by the treatment. Yet the practice continues. Cohen and Cosgrove write:

As ways to manipulate height expand, the government agencies that protect patients, the nonprofit organizations that speak for them, and the physicians who treat them all have been influenced by the pharmaceutical companies that sell to them. In the end, short stature is a multibillion-dollar business that is still growing like a weed.

The authors call Normal at Any Cost a cautionary tale. The warnings they issue - about conflicts of interest among doctors, drug companies, and patient advocacy groups; medicalization of social and psychological problems; parental anxieties and experiments on children; hype about miracle medical breakthroughs - resonate beyond the medical manipulation of height. As Cohen and Cosgrove point out in their introduction, these dynamics are also quite relevant to the prospect of genetic interventions into the characteristics of future children:

The story of treating children to make them grow taller or remain shorter than nature may have intended suggests that the future of eugenics is not likely to involve totalitarian governments, mad scientists or schemes to create worker drones and superbeings. Instead, it will take place through the individual decisions parents make on the basis of the options that doctors present, and the temptations that the genetic age of medicine offer.

And in a Los Angeles Times op-ed, Cosgrove explicitly connects the use of drugs to "fix" or "improve" children's stature to an even more extreme prospect: selecting or manipulating children's traits with genetic and reproductive technologies. She points to the LA fertility doctor who recently announced a program - which he withdrew "for now" after a blast of criticism - to select embryos not only for sex, but for hair, eye and skin color too. "[B]efore we go too far down that path," she advises,

we ought to think carefully about where we're heading. What kind of kid really wants her parents to choose her genes? If you don't like your mother's taste in clothes, say, or hairdos, why would you want her to pick out everything about you? And more to the point, whose life is it anyway?

Marcy Darnovsky, Ph.D., is Associate Executive Director at the Center for Genetics and Society.

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