Saturday, July 17, 2010

Washington Post - Can we take the higher road?

Rob Stein's Washington Post article today was not as negative as some had feared. In fact, overall, it was fairly well balanced (especially since he let me have the last word :-) ). However, I have some real issues with its leading paragraph. Mr. Stein interviewed me about my experience with the 23andMe sample mix-up and asked me to put him in touch with others involved because, apparently, he was having a difficult time finding negative DTC testing experiences to write about in his story.

Why would a responsible journalist from one of the country's premier publications open an article about a subject that has so much promise (when we know most people never read beyond the first paragraph) with the following:

One woman panicked when the genetic test she had ordered over the Internet concluded that her son was carrying a life-threatening disorder and, even more disturbing, that he was not -- genetically -- her son. Another, who always thought she was white, was flabbergasted to find her genes were mostly of African origin. A third woman's result was still more stunning: She was a man, it said.
"I thought, 'Oh my God. Am I really a man?' " said Denise Weinrich, 48, of St. Peters, Mo. "I thought, 'What's the matter with me? I'm not who I thought I was. How am I going to tell my children?' DNA doesn't lie."

1. "carrying a life-threatening disorder"  - This is misleading. According to her post, the test said that her son was a CARRIER of hemochromatosis. Most people who read this phrase will interpret this to mean that she was told her son HAD a life-threatening illness.  23andMe reports data for two mutations in the HFE gene - C282Y and H63D. It is estimated that, respectively, 11% and 16% of Northern Europeans are carriers of these mutations and they have NO symptoms. Even for the majority of the people who actually have this disease, it is not life threatening. The choice of words is ambiguous at best and sensationalized at worst. (More info on hemochromatosis here.)

2. "flabbergasted" - This is a misstatement. I know this because the person to whom Stein is referring is my niece. He never spoke to my niece directly and I never said, nor implied,  that my niece was "flabbergasted." Actually, I expressed the exact opposite to Stein. First of all, I told him that when she initially called me about her test, she very matter-of-factly stated, "My genes are most similar to a Nigerian" with, surprisingly, little reaction.  Secondly, I told Stein that I immediately informed my niece that it was a mistake, so there was never any real question of whether she was actually African genetically.  How he got "flabbergasted" from that, I do not know.

3. Denise Wienrich - Her experience has been an overwhelmingly positive one, so why must it be portrayed in the worst possible light? Here is what she wrote to me via email this morning,

"This is so sad....95% of what I said was how thankful I am for the testing...Told the story of my adopted children and the 30+ Guat(emalan) kids who also tested with 23andMe. How I would never want DNA testing regulated because it would be hard to do for cash strapped adoptive parents, etc.  

No wonder people complain about the interviews they give to reporters."  (bold mine) 

This entire debate flared up because of a lab mistake which led to the accidental reporting of misleading data in the very complex world of personal genomics. Why insist on opening the article with an ostensibly intentional and misleading statement in what should be a very simple exercise in reporting the facts – journalism? Here we are at the cusp of something widely recognized, even by its critics, as holding the potential of becoming one of the largest revolutions of health care in history - personalized genomics.  Can’t we take the higher road?


  1. Great post! I agree with you about the wording of the first's misleading.

  2. Daniel MacArthur examines this further at his highly regarded blog "Genetic Future":