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Justice — 70 years late

Last month the state of Iowa shelled out $925,000 to settle a lawsuit filed in 2003 by a handful of people who, 70 years ago, became unwitting participants in a stuttering study that left them psychologically scarred. For some, the money came too late. Three of the six study participants represented in the lawsuit had already died. The cash went to their sons and daughters via their estates.

The trial, which was later dubbed “The Monster Study,” began in 1939. At that time (and to some extent today), stuttering was thought to be an inherited disorder. But renowned speech pathologist Wendell Johnson, himself a stutterer, had a hunch that kids could be made to become stutterers simply by being labeled as such.

To test his theory, he and his team hand-picked 22 children from the Iowa Soldiers’ Orphans’ Home—10 stutterers and 12 not—to participate. The children were subjected to either negative therapy (“you are a stutterer and need to work on your speech”) or positive therapy (“you speak like a completely normal child”). Though only 5 children were true stutterers, 11 children in the study were told they had a speech problem. Johnson’s grad student Mary Tudor also offered “helpful” advice: don’t speak if you can’t speak correctly; take a breath before you say a word if you think you’re going to stutter; stop and start over; put your tongue on the roof of your mouth; watch your speech all the time.

Not surprisingly, whatever ability the children had to speak fluently evaporated quickly. Some resorted to talking in haiku-like phrases (There’s a jar. There’s a fox. Got a coat on). Some stopped speaking altogether.

No one can deny that the experiment was cruel and inhumane. But that was 70 years ago. Today there are ample measures in place—institutional review boards, ethics guidelines, informed consent — designed to keep studies ethical. Monster studies are a thing of the past.

Right?

Posted on behalf of Cassandra Willyard, Nature Medicine’s news intern.

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    Shivkumar said:

    The monster trials you speak of should include those that are as much an act of omission as an act of commission.We know of the Tuskegee trial because it was the first that became (in)famous. But what about the hundreds that are ‘outsourced’ to the developing world- where rules for clinical trials are less stringent- maybe only for Phase 3 approval for a drug that perhaps never reaches the participants after the trial is over?That is like an East Asian worker stitching clothes for Tommy Hilfiger who says they are made for a white population of the developed world.