Each year the American Academy of Pediatrics National Conference and Exhibition fills a huge convention hall with the latest products that can improve health and generate practice revenue.
Some products are solutions to the minor annoyances of everyday practice. For instance, there are ear curettes equipped with their own LED light and a magnifying lens. There are countless creams to treat rashes. There are new automated devices for testing hearing, vision, and attention. And at the far extreme, there are products with the potential to revolutionize clinical care or to bankrupt it. The latest technology in that category is whole exome sequencing.
The new title for this field is precision medicine. Who could be against precision? The jargon has evolved from pharmacogenetics (too limited a description) to personalized medicine (a great image in the era of consumer-driven health care, but it has become tainted as concierge, luxury, and privileged care), and then in President Obama’s 2015 State of the Union address, he has retitled it as precision medicine. Rather than treating “the average patient,” a physician will be able to select a care plan tailored precisely for the genetics of one particular patient.
A couple weeks earlier I had listened to a national meeting of pediatric ethicists discuss this technology. Some proponents discussed the possibility of doing whole exome sequencing (WES) for every newborn. Alas, many ethicists can’t do math. Even if the cost goes below $1,000 per test, at 4 million babies per year in the United States, that is $4 billion per year. That sounds like a small sum, compared with the current federal deficit, but the original budget for the entire, 10-year-long Human Genome Project (HGP) was $4.5 billion. There were complaints in that era that diverting such an enormous amount of money into the HGP would cut the funding of a lot of other very good research at the National Institutes of Health. Conversely, Medicare spends $4.5 billion on hepatitis C treatment.
Viewed differently, the yearly per capita payment to general pediatricians, excluding vaccine costs, is around $1,000. Perhaps I’m biased, but I think I provide much more value than a genetic sequence.
Precision medicine has a lot of potential. So far, it is mostly potential. One colleague related that, in the past year, he has done WES on three patients, at about $4,000 charge for each, and gotten positive results in two cases. He figures soon he will be ordering it on every child with symptoms of autism, developmental delay, or failure to thrive. Is that a wise idea? That, it seems, is the area in which there is the least illuminating research.
Dr. Powell is a pediatric hospitalist and clinical ethics consultant living in St. Louis.
