On Sunday of this week, the Boston Globe published an article that I've been waiting to see for months. It's Beth Daley's investigative report on noninvasive prenatal testing, and I'm hoping it will both create a larger public conversation, and shift the terms of the conversation so far.
As many of you know, NIPT is a new technology that promises to detect Down syndrome and other chromosomal conditions based on a maternal blood draw alone. These tests are sold as "99% accurate"
– something I believed for a long time, and that some health professionals seem to believe
– but as genetic counselor Katie Stoll has written,
the actual test performance is nowhere near as good. NIPT is not diagnostic; it is a screening test, and a "positive" result only means that a diagnostic procedure, like amniocentesis or CVS, will be required to confirm fetal status.
I believe that it is not enough to consider reproductive technologies in the abstract. They cannot be contemplated only in a statistical or bioethical vacuum: we need fact-based stories to perceive human consequences on the ground. Beth's article accomplishes this by focusing on the cost of false positives and false negatives in real people. She also delves into the facts about LDTs, or laboratory-developed tests, which are currently unregulated by the FDA. Because her article has already sparked pieces at The New York Times, NBC News, and elsewhere, I have hopes that a new conversation is beginning.
I very much hope that disability will be a part of that conversation. In an online chat that accompanied the article launch, the main conversation focused on the accuracy of marketing claims and the consequences for women. These are vital and relevant issues, but they aren't the only ones. We also need to question what we test for, and why – and the way "objective" tests project human values into the world. Ultimately, I think NIPT needs to be seen in the context of a rapidly increasing power to read and alter our genetic code.
One key part of Beth's report is that it shifts the ground of discussion. Though questions about NIPT often get subsumed under discussions of abortion – an idea encouraged by the Globe's headline – Beth's article makes clear that other questions, from corporate responsibility to loopholes in regulation to gaps in practitioner understanding, are also at issue.
George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.
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