Health policy people use a "quality-adjusted life year" (QALY) (Wikipedia) to determine whether a medical intervention is worth it. For each year of perfect health it would provide, it gets a 1. If you die, it gets a zero. Points come off for leaving you blind, amputated, or in a wheelchair.
These researchers find that using that standard, it's not worth it to test all pregnant women for it, just the ones with a family history of the disease.
SMA screening does not approach the cost-effective range ($50-100,000/QALY) until the cost of severe disease is over $7 million or the cost of the mild disease is over $17 million, both of which are more than 20 times the baseline estimates.Now I accept the idea that we should only pay for treatments that work. But this is not a question of whether it works.This is a question of whether it is worth it to prevent a woman from having a kid with SMA. The question is not just the number of years of life of the kid who grows up (or not) with SMA but the quality of life of the mother. I know if I had had a kid with disabilities, I would love her as much as any other kid, but if I had a chance early on, before I was emotionally invested in the fetus, I think I'd abort and try again, because at that point it's not a person, and it's not going to turn into the baby I want. Okay, I'm selfish, and while it's just a wad of tissue, I'm going to hit reset.
There I go, showing that I'm not just pro-choice but in many cases pro-abortion. Women who are pregnant with kids who will be disabled, and who would really rather not have a disabled kid, should have an abortion. Women who will be bad mothers should have abortions.
But in the case of SMA testing, I think it is a mistake to use only the quality-adjusted life year of the kid as a measure. You need to take into account the quality of life of the family.