Musings of a Marfan Mom

Shoddy Journalism

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I have a Google Alerts out for articles on Marfan syndrome, and I was shocked and then angry to come across this UK Times Online article: Embryos Destroyed for ‘Minor’ Disorders. Even more upsetting to me was that the article has been picked up by several other papers and websites. I debated whether or not to blog about this, but Mark convinced me last night that the other side needs to be heard (aside from the anonymous comment I left on the article).

Let me first explain that I am not providing a commentary on pre-implantation genetic diagnosis (PGD). Whether or not I support PGD is irrelevant. My beef here is with shoddy, biased journalism.

I could tell by the title that this wouldn’t necessarily be a fair piece. Destroyed is a very emotionally charged word, and who determines what minor means?

The author, Lois Rogers, says that there is a debate because fertility regulators in Britain are allowing 100 different disorders to be screened for using PGD, “including many illnesses that are not life-threatening.” Rogers then goes on to hold up Marfan syndrome as a genetic “defect” (quotations hers) that isn’t life-threatening and (it’s implied) shouldn’t be included on the PGD list. She defines Marfan as “a congenital weakness of connective tissue that can lead to abnormal growth.” That’s it. She conveniently leaves out the parts about how Marfan causes abnormal growth of the AORTA, how it IS life-threatening, how some people with Marfan have crippling pain and must go on disability early on in life. I try to take a positive view of Marfan, and I admit I’m on the less-severe side of the spectrum, so I am always hesitant to discuss all the terrible parts of the disorder because I don’t think it’s healthy to dwell on that. However, it’s the truth: Marfan is serious stuff. I’ve lost 10 friends to complications of Marfan. Most of them were very young…2 were just teenagers. People like Rogers do our cause a disservice by minimizing the severity of Marfan.

Beyond that, this is just really poor journalism! How much effort would it have taken Rogers to research Marfan? I think she’d have found it’s actually a poor example of the point she’s trying to make. Isn’t research a journalist’s job?! And, if this article really was unbiased, it would also show the point of view of people who support PGD. The closest it comes is by Ms. Harris’ quote (who has Porphyria), but did not use PGD to conceive her children: “If you have lived with someone unable to function and on constant morphine because of the pain, you would take a different view.”

I plan on writing a letter to the editor of the Times Online about this article. We shouldn’t let anyone get away with inaccurate reporting on Marfan. If you’d like to join me (the more the merrier!), you can contact them at letters@thetimes.co.uk. Make sure to include your postal address and daytime telephone number.

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3 Comments

  1. I’ve written for newspapers, while not at the “level” of this one, I’m appalled by the word choice. Even at my dinky community newspaper, I thought carefully about every word I used. I tried to read my story from the perspective of someone else. I’ve noticed a pattern of this type of behavior in UK newspapers. They are becoming more and more tabloid like. And, I just read a report that they are thriving because of their new format. I digress. Point is. This IS bad journalism, and you should point it out. Kudos. Thumbs up and five stars. Oh, and a big hug because you’re the best.

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  2. I was going to leave a comment on the UK Times site myself, but due to time constraints, and having to register to leave a comment, I didn’t.
    Spontaneous dissections occur many times in people with Marfan. My mother already had her aortic valve replaced, and then her entire descending aorta ruptured. She had a giant aneurysm. Luckily, she is very aware of her body, and we were able to keep her stable until she got flown to Texas for surgery… but that sounds life threatening to me. And it happens more often than not… mainly due to innacurate diagnoses in the ER.

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  3. Hi – Thanks for your comment on my blog (Choices That Matter). I eventually want to comment on the specific things you brought up, which I will do–but at the moment blogspot seems to be having some technical troubles! But I did want to just 1) thank you for your comment, which gave me more food for thought, 2) apologize for taking the UK reporter’s assertion of Marfan as “minor” at face value, and 3) tell you how interesting it is to read your Marfan 101, because my disorder (osteogenesis imperfecta) is also a connective tissue disorder, and although many hallmark symptoms are totally different (we are really short!), a lot of the symptoms are similar. I especially appreciate the photo on your masthead of the loose finger tricks. My daughter (who also has OI) and I love our finger tricks.

    I do plan to post a comment back on my blog, responding to your comment–furthering the conversation a bit–if you are interested in checking back. But I’m glad to have found your blog!

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