News: The corporate arms race for a better Down syndrome prenatal test

Tarot CardsOver at the News page, there is an epic take down of efforts to develop a Down syndrome prenatal test based on a urine sample.

There is also a helpful Ted Talk to explain the challenge of understanding screening test results, like those of MaterniT21, verifi, Harmony, and Panorama (though the example used is a screening test for AIDS):

People don’t understand uncertainty

  • I enjoy TED talks and have daydreamed of giving one. Apparently I have been giving such a talk since 2008 when explaining the misleading effect of screening test’s detection rate versus positive predictive value, as Peter Donnelly, a statistician, does about half-way through his talk at this link.

“The corporate arms race” to develop a better Down syndrome prenatal test

  • There is news out of Britain of a potential prenatal test for Down syndrome based solely off of a maternal urine sample which has a claimed 90% detection rate. It’s developer, Dr. Ray Iles, says its the culmination of his life’s work. Prof. Chris Kaposy wonders if Dr. Iles may have spent his life working towards something more worthwhile:

There is an inconsistency between the lived experience of people who have Down syndrome and the corporate arms race to develop new and better means for identifying fetuses with Down syndrome. … The arms race to develop these tests is not being driven by the needs of people with Down syndrome or the needs of their families. … [C]reating these tests might require a lifetime’s work. But the social utility of these tests is incommensurate with the effort needed to create them. In contrast to the scientist who devotes her life to the treatment of cancer, Dr. Iles’s devotion to create a test that helps parents to avoid the birth of people who tend to enjoy their lives seems somehow less ambitious, or off the mark.

  • As Megan Allyse says over at the Prenatal Information Resource Consortium: “Word.”

The News page is a scroll of headlines, excerpts, and links to news about prenatal testing and Down syndrome. If you read something you think worthy of sharing, feel free to e-mail me a link at mleach@downsyndromeprenataltesting.com.

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