When the Experts are Ignorant

Dr. Lawrence B. Werlin may be a renowned specialist in reproductive endocrinology and infertility, but he doesn’t know squat about hemophilia. The March 23 newswires carried his announcement that his technique known as Preimplantation Genetic Diagnosis (PGD) allows couples to screen their embryos for hemophilia, “and thereby remove the risk of giving birth to a child with hemophilia.”

To market his new technology, he offers the “scary” scenario of what it is like to have hemophilia–if you were born in the 1940s. He quotes a woman who reflects that her father was only given till age 10 to live. He died in his early 50s, although the article does not say what year he died, or what he died from! (Maybe heart disease?) He also incorrectly cites statistics, which he claims “point to hemophilia as the cause of death for 32 people every week.” What? 32 patients every week? That’s 1,664 patients a year dying from hemophilia. That’s a 300% negative birth rate for people with hemophilia. I guess with statistics like these, we don’t need PGD. Nature will take its course.

Sadly, the article uses these incorrect scare tactics (or shoddy stats) to market this new procedure. I am all for choice, but let’s be clear about what hemophilia really is in the US: a completely manageable blood-clotting disorder, in which patients can lead normal lives and enjoy a normal life span. And we have 18,000 people in our community who can prove it. To misrepresent it as he has in his article is to encourage parents to engage in a medical procedure based on incomplete and incorrect information that could compromise their ethics–and eliminate the natural selection of some beautiful children, like our sons. If parents don’t want or can’t handle a child with a medical condition, so be it. But to “eliminate” that child because their doctor leads them to think he will suffer horribly or die at a young age is just plain wrong when it comes to hemophilia. That’s medical irresponsibility and ignorance–and pretty slick marketing.

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