Premature talk of a cure

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Many serious health journalists struggle with how to handle research stories in animals. Last night, KSTP-TV in MInneapolis-St. Paul presented a story that showed little attempt to put mouse research findings into a meaningful context.

It was on Rett Syndrome, which KSTP reported was “a disorder similar to autism.” They said, “Doctors, who are testing mice, were able to reverse the symptoms of Rett Syndrome, an advancement beyond what many had even hoped for. … The discovery is so monumental because it could lead not only to a cure for Rett Syndrome, but it could also help doctors working to cure autism. This is still in the research stage, a cure is at least ten years out. In the meantime, the Evert family and thousands of others are excited about a Rett Syndrome clinic set to open at Gillett (sic) Childrens’ Hospital in Saint Paul.”

First, the finding is not new; it is more than a month old.

Second, the story made little of the leap required from mice to humans. How can one even discuss “cure” with something that has not yet been tried in humans? How good an animal model is the mouse for this syndrome? What are the hurdles that lie ahead? We heard none of this. Yet we heard “cure” three times within seconds.

Finally, the story seemed to fall prey to a news release from a local hospital creating a clinic for Rett Syndrome patients, without any regard for the fact that such patients may receive specialized treatment at other area hospitals as well.

But, as evidenced from a listing of stories on the research on the Rett Syndrome Research Foundation website, KSTP was not alone. Many other news organizations used the word “cure” in describing this perhaps promising but certainly preliminary finding.

I would not dissuade people from finding hope wherever they choose to invest it. But I would dissuade journalists from promoting what may be false hope laden with more emotion than evidence.

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Sherri Brady

March 20, 2007 at 12:50 am

As a parent of a daughter with Rett Syndrome I find your comentary very sad and offensive. I don’t have a problem with the questions you raise but the negativity in my opinion is uncalled for. If you had a child with Rett you would understand why this research does give us hope even though we are well aware that it may or may not lead to a cure and even if it does it could take a very long time (something the report specifically points out).
As for the story being a month old, what’s your point? As far as I’m concerned that’s still new, it’s not like it happened a year ago. This story was I’m sure initiated by the family, they may not have had the time to contact the station earlier or they may have been trying to get the story covered for the last month and this was the first time they were successful.
In addition you’re talking about a news story, so of course they are going to be limited on information and play up the key words that get the public’s attention. A child with Rett Syndrome is born once every 5 hours yet most people have never heard of it, we have to do whatever we can to get people’s attention.
Last but not least, you state when refering to the Rett Clinic that the mention of it is “without any regard for the fact that such patients may receive specialized treatment at other area hospitals as well”. Do you know this for a fact? There are very few doctors in the country that are familiar with Rett and even those that know what it is are by no means experts. This disorder is a very complicated, involved and inpredictable. Parents struggle on a daily basis to find medical professionals that know enough about Rett or at least are willing to learn to help us manage issues such as reflux, scoliosis, seizures, apraxia, etc. and all the medications associated with them. So many look at our girls and write them off, I have had countless parents tell me that when they’ve gotten the diagnosis the doctors have basically told them the child will lose all skills and that they should just give up hope of any type of quality life for their child.
Last but not least, in regard to emotion vs. evidence I think you could use more of both. Yes this is a news story but it would be sad to relay a story about a child, a human being without any emotion.
Sherri Brady
Hopeful Mom to Lauren (10) Rett Syndrome
Whittier, CA.

The Publisher

March 20, 2007 at 7:10 am

The original post was about the quality of the journalism in the story profiled.
My heart goes out to the parents of children with Rett Syndrome. This is a complex and serious syndrome, worthy of full and complete coverage.
But the story was simplistic and incomplete. Viewers deserve better – whether they are the parents of a child with this diagnosis or not.
The publisher