CGS : IVF websites often mum on embryo gene test risks

Fertility clinic websites aren't doing a great job of explaining the risks of testing an embryo for genetic disorders before it's implanted in the womb, researchers found.

The procedure, known as pre-implantation genetic diagnosis (PGD), can be used to test for 5,000 different genetic disorders and, more controversially, choose the sex of an infant. But it's not 100-percent reliable, and could, in rare cases, cause harm to the embryo or even destroy it.

Dr. Robert Klitzman of Columbia University and his colleagues took a look at the websites of 83 clinics offering PGD to investigate how fully they explained these risks. Twenty-two of the clinics were based at hospitals or universities, and the rest were private, freestanding clinics.

Just 35 percent of the websites Klitzman and his team surveyed mentioned the possibility that the test could miss the target diagnosis, while only 18 percent mentioned the risk that the procedure could destroy the embryo. Fourteen percent described PGD as "new" or "controversial."

There were also differences in the sorts of information provided by hospital- or university-affiliated clinics and that offered by private clinics. For example, 18 percent of private clinics were more likely to mention the controversial practice of selecting gender without a medical reason for doing so, while none of the university- or hospital-based clinics did.

However, the private clinics did provide more extensive information about the risks and benefits of PGD; this is possibly because university- or hospital-based clinics can rely on the prestige of their affiliated institution, Klitzman suggested.

And while private clinics may have been more forthcoming with this information, he added, their websites still left a lot to be desired; for example, just 43 percent mentioned the risk of missing a target diagnosis, and 21 percent noted that PGD posed risks to the embryo.

The information that clinics offer on their websites is, in essence, advertising, and should be seen as such by consumers, said Klitzman, who directs a new master's program in bioethics at Columbia. He recommended looking for citations -- for example, in a respected medical journal -- for any claims made on a site.

"This also speaks to the need for physicians to have time to go over material with patients," he added.

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