Most people would be willing to pay to test their newborn baby for spinal muscular atrophy (SMA) — a screening currently not given newborns in the U.S. — although no direct treatment is available for the disease, according to a study published in the journal Pediatric Neurology. But the test is perceived as more valuable if treatments that improve life quality and survival were available.
Adding an SMA test to newborn screening programs also remains controversial and a matter of ethical concern due to the fact that the test may not accurately predict disease severity or onset, or the way the condition will progress.
To evaluate the public’s preferences regarding SMA newborn screening, and whether and how much people would be willing to pay for the test, researchers led by Dr. Peter J. Neumann conducted an online “willingness to pay” survey.
A total of 982 people took part. Results showed a clear majority, 79 percent to 87 percent of participants, would prefer to screen their newborn babies for SMA and would be willing to pay an average of $253 for the test, even in the absence of an available therapy.
Were treatment available, the willingness to pay rose, as it also did among participants with higher incomes. Factors that influenced people’s willingness to pay for the test included its accuracy, and the availability and effectiveness of a treatment.
Between 13 percent and 21 percent of the participants said they would not give the test to their newborn even if it were free, and some said they would only screen their baby if a cure were available.
Newborn screening can identify disabling and potentially fatal diseases in babies shortly after birth. Diagnosing such diseases early provides a window of opportunity for early intervention to prevent premature death or the need for long-term care. Newborn screening is conducted in the U.S. for diseases for which a treatment is available.
Screening newborns for diseases that cannot now be treated, however, still offers advantages, such as making more knowledgeable healthcare decisions, avoiding long and expensive diagnostic tests, the possibility of placing an affected child in clinical trials of new treatments and early palliative care, and allowing families to plan their finances.
“Future studies are needed to determine how early-detection may impact long-term patient outcomes,” wrote Dr. Pei-Jung Lin of Tufts Medical Center in Boston and a co-author of the study, “Willingness to Pay for a Newborn Screening Test for Spinal Muscular Atrophy”.