Human Nature: Science, Technology, and Life.

The Birthmark

Six years ago, President Bush's bioethics council opened its inaugural meeting with a discussion of The Birth-Mark, a Nathaniel Hawthorne short story. Council member Bill May summarized the plot, in which a scientist "loves his wife but kills her in the attempt to remove her single imperfection, a birthmark on her left cheek." For nearly an hour, the council sat around debating what the mark symbolized.

Today, the council has run its course—the Obama administration will probably replace it with a more sympathetic panel—but the news has come back to birthmarks. The Vascular Birthmarks Foundation and the Vascular Birthmark Institute of New York just held their eighth annual Vascular Birthmarks Conference, at which dozens of families met with doctors to discuss surgery and other medical options. The New York Times reports from the conference:

"We can no longer accept that a child can go through life being severely disfigured, and accept that as their lot," said Dr. [Milton] Waner, the co-director of the Vascular Birthmark Institute. "Something needs to be done, and I believe that every child has the right to look normal." ... Much of the concern, for many families at the conference, was financial. Doctors said insurance providers frequently refused to pay for the treatments, classifying them as cosmetic surgery. "Their definition of cosmetic is very broad," Dr. Waner said. "This is not cosmetic."

Strictly speaking, Dr. Waner is incorrect. Disfigurement per se is cosmetic. Merriam-Webster's medical dictionary, on which the National Institutes of Health rely, defines cosmetic as "of, relating to, or making for beauty." It defines cosmetic surgery as "correcting defects especially of the face." One question is whether insurers should cover such procedures. Beneath that question lies another: Do children need them?

When you read about these kids and the abuse they sometimes endure for looking unusual, your heart goes out to them. One mother tells the Times about a boy who walked past her son and said, "Look at your face. You look ugly." But which is the problem, the birthmark or the bad attitude? Something needs to be done, but is it surgery? Is every child entitled to "look normal"? Or is he entitled to respect regardless of how he looks?

As it happens, surgery for the kid who was called ugly is a no-brainer. That's because his disfigurement had functional effects, enlarging his tongue so he couldn't speak intelligibly. Dr. Waner and others who take on such cases pro bono are doing noble work. But the quest for normality can extend to iffier cases. The Times describes a baby at the conference who "has a circular, purple mark on her forehead about the size of a nickel." Such defects, known as hemangiomas, "often disappear or shrink in 10 to 12 years, but they can have a social and psychological impact—on children in particular, who must live with the stigma of looking different." Is that a good reason for surgery?

I'm not saying kids with purely cosmetic defects don't suffer. They do. But their suffering isn't medical. It's social. Cosmetic surgery changes an otherwise healthy body to fit culturally imposed aesthetic standards. If a purple mark on your forehead is too much to bear, what about male breasts? What about a flat female chest? How far should we extend the "right"—and, implicitly, the obligation—to look normal?

We had a vascular birth mark in my family. It was considerably bigger than a nickel. In time, it subsided and vanished. The child who was born with it had something more important than the right to look normal. She had the right not to.

P.S. It looks like our "discuss" link is still broken, so here's a handmade link to the HN fray in case you'd like to join the discussion: http://fray.slate.com/discuss/forums/2100253/ShowForum.aspx.

No Chubby For Old Men

 If you're looking for interesting bathroom reading, allow me to recommend Urology. The July issue is chock full of page-turners: "Robotic Prostatectomy," "Scrotal Mass with Bladder Outlet Obstruction," "Histologic Comparison of Pubovaginal Sling Graft Materials," "Multi-Drug-Resistant Bacteremia After Transrectal Ultrasound Guided Prostate Biopsies," and my favorite, "Modern Management of Adult-Acquired Buried Penis" (it's "a result of obesity" - don't ask).

Seriously, though, I want to talk about an article in the July issue. It's called, "Does ‘Normal' Aging Imply Urinary, Bowel, and Erectile Dysfunction?" Here are key excerpts from the abstract:

We assessed if urinary, bowel, and sexual dysfunction and associated bother were part of the "normal" aging process in the general male Dutch population. ... Three thousand eight hundred ten (3810) men responded (81%), mean age 67 years, range 58 to 78. ... Bowel dysfunction and bother were not related to age. Erectile dysfunction was reported by 19%, ranging from 12% in the youngest to 26% in the oldest group ...

Conclusions: Urinary and bowel dysfunction were not part of the "normal" aging process. Erectile dysfunction was significantly more prevalent in older men.

And here's the headline on the Reuters write-up: "Erectile dysfunction may be ‘normal' with age."

The curious thing here is the word normal. It's being used in this context to mean age-related. Most men in the sample didn't have erectile dysfunction. But because ED's frequency increases with age, and because we think of aging as a universal process accompanied by physical decline, ED seems normal.

Since "urinary and bowel dysfunction were not part of the ‘normal' aging process," the authors conclude, they "may well be related to prior treatment" in men who have been treated for prostate cancer. This appears to make them logical targets for prevention or remedy. Does the opposite implication follow for ED? Does its "normality" make it a less compelling target?

There are many plausible ways to think about normality and health. Age-dependence is one of them. To me, the authors' framework makes sense: Medicine should focus first on maladies that strike some people unusually early in life. Maladies that accumulate with age are less unfair. They're also less tractable, since they're more biologically inherent.

ED, however, is a confounding example because it's in the process of being transformed from a "normal" to a commonly treated condition. Bob Dole made his famous ad for Viagra  in 1999, when he was 76. In the last decade, 35 million men have used Viagra. Millions more have taken similar drugs such as Cialis or Levitra. Modern man has set out to conquer the ancient loss of manhood.