Everyone with a special interest in a topic has probably experienced the same thing once that topic is covered in the news: excitement over the coverage, followed by disappointment when the piece makes mistakes. Some of this is inevitable; journalists are only human, and they are asked to cover subjects all over the map. Sometimes, however, the mistakes are too great to be chalked up to human frailty. This is bad enough for interests such as computer technology, chess, or stamp collecting; it’s much worse when the subject involves a potentially life-threatening illness.
Such is the case with a new story on Marfan syndrome (apparently part of some news conglomerate; see, for example, this version of the story). The story means well, and any attention is good attention to some degree. But the inaccuracies are annoying:
- “…height is in no way a criteria for Marfan Syndrome.” True. Yet, given two equal groups, one with Marfan and one without, which group will have the higher average height? Being tall is not part of the criteria, but it can be an important warning sign, especially when coupled with lankiness, long fingers, etc. Will anyone read that and decide to ignore their own physical signs? I hope not.
- “The Marfan Syndrome Web site, www.marfan.org…” It would be nice for the National Marfan Foundation to get proper attribution. Besides it being a marvelous resource, it is responsible for helping reach many of the medical milestones that make the lives of Marfan patients better.
- “…and the eyes may appear normal without a special exam until the lens dislocates.” Normal-looking eyes are a criterion for Marfan? I welcome training for optometrists and opthamologists in detecting ectopia lentis as a sign of Marfan, but I wouldn’t go so far as to say that everyone with normal-looking eyes should be tested in the absence of other signs.
- The good doctor quoted often sounds like an idiot; this is a good sign that the quotes are getting mangled by the journalist. For example: “The aorta can expand silently for a long time, until the aorta tears or ruptures, which is deadly, or there can be tearing, which is life threatening and can lead to death.” (So how do we distinguish between tearing that is deadly and tearing that is life-threatening?) Even worse: “Most people who are referred to me and my colleague, who is one of the early discoverers of Marfan, donâ€™t have the Marfan Syndrome.” (That colleague must be really old, given that Marfan was discovered in the 1890s!) I’ve seen domain experts misquoted often enough to believe that these quotes should reflect on the reporter or her editors, not the doctor.
Excessive criticism on our part tends to make journalists defensive, and can result in their avoiding complex and obscure topics, which punishes us rather than the journalist. So, there’s a question about how much of a fuss people should raise, especially since most of the objections here are minor (though I would not discount the discussion on height, which can serve as an excuse for those looking for reasons not to get checked out).
But it does make you wonder. If journalists are this bad when talking about subjects you know, are they really any better when talking about subject you don’t know?
One of the best resources outside of the NMF site itself is Jeanette Navia’s Marfan Life site. She has a quick post mentioning the article in the blog.