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The Risks and Rewards of a "Genetically Flawed Child"

Published: 2/28/07
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by james s. hirsch

I recently appeared on a radio show to talk about Cheating Destiny, my book on diabetes; I've had type 1 since I was a teenager. The following day, the talk show host, Jan Mickelson at 1040 WHO in Des Moines, Iowa, told his morning listeners that I was a genetically flawed individual.

To be fair, he actually said that I was "a highly educated, highly functioning, genetically flawed individual" — confirming that my master's degree was indeed good for something. In Mickelson's view, I did a bad thing when my wife and I decided to start a family. "I know the desire to reproduce from your own gene pool is almost overwhelming," he said, "but what if you know that you have the shallow end of your own pool? If you are genetically flawed, just don't reproduce. That's just being a bad citizen."

Unfortunately, two years ago, our son, Garrett, was diagnosed at age 3 with type 1 diabetes. No one has informed him of any limitations or imperfections; but according to Mickelson, Garrett is a "genetically flawed child," and my passing on the disease was "child abuse and an evil thing to do."

His comments, once downloaded on an audio link and emailed by diabetic patients around the globe, caused an outrage. Mickelson received a number of emails that compared him, unfavorably, to Hitler. To put out the storm, he immediately invited me back on his show, and he apologized, sort of. He conceded that he misrepresented the role of genetics in type 1 diabetes — he had said they played a "dominant role." In fact, a child with a type 1 diabetic father has about a 7 percent chance of developing the disease; a child with a type 1 mother, about 2 percent. The genetic risks are much higher for children with parents who have type 2 diabetes: if both parents have type 2, the child has a 45 percent chance of developing it.

But in our second interview, Mickelson reaffirmed his view that diabetic patients are "genetically flawed," and he is still troubled that these individuals have children. He explained that what really bothers him are "welfare moms" who make tax payers support their children, and he believes this happens often with diabetic parents who have relatively high medical costs.

Mickelson's attack is a useful reminder that diabetic patients have long been the victims of discrimination, ignorance, and indifference. Lee Iacocca, whose wife, Mary, died from diabetes in 1983, said that in the auto industry, diabetic plant workers "were a cut above lepers" — and as The New York Times recently reported, patients still suffer workplace discrimination. Meantime, parents of diabetic children have to fight to ensure that schools provide legally mandated medical assistance, and insurers routinely reject coverage — or charge substantially higher premiums — for even well-controlled diabetic patients. The bias against diabetes comes easily, perhaps because the disease is chronic ("they're incurable") or perhaps because type 2 diabetes is closely linked to obesity ("they're lazy"). No one, for example, would describe a woman with breast cancer or a senior citizen with Alzheimer's as "genetically flawed," despite those diseases being genetically based.

At any rate, the claim that diabetics are intrinsically impaired is laughable on its face: Such diabetic luminaries as Thomas Edison, Jackie Robinson, and Ernest Hemingway exemplify genetic superiority, while those with the disease have fought in Iraq, won Olympic gold medals, and climbed Mount Everest.

Despite those achievements, the question of whether diabetic patients should have children is still an area of legitimate debate. The claim that they shouldn't is not new. Elliott Joslin, America's preeminent diabetes specialist in the first half of the 20th century, urged his patients not to marry other diabetics for just that reason. In my own case, I knew that treatment has improved dramatically since the days of Joslin, and that if either of our two children developed the disease, we would manage. But I can't say I was entirely prepared for the event itself.

When Garrett was diagnosed, I felt terrible guilt and condemned myself for helping to bring Garrett into the world. And the first year was tough — the daily insulin shots and finger pricks and the balancing of food and exercise, an elaborate scheme to keep your small child on this narrow glycemic precipice. Who needs a wacky talk show host to eviscerate you when you've already done it yourself?

But Garrett surprised us. No, he doesn't like his diabetes, and some days he still balks at his shots. But he's accepted it and has already learned a great deal. When his school nurse recently tested his blood sugar and found it low, Garrett explained, "That's my Daddy's fault. He gave me too much insulin."

Garrett is now flourishing in kindergarten, beloved by teachers and friends and excelling as one of the best athletes on his soccer and basketball teams. And when I see him with friends or family, at school, or on the ball field or sleeping in his mother's lap, I consider the question that has haunted me from the first and that Jan Mickelson reprised: Was it really a mistake to have Garrett? Of course not. He brings so much joy to so many people. If he were not around, the world would be a much smaller place.

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