A study of deaths and handicap in a consecutive series of spina bifida treated unselectively from birth.
In a consecutive series of spina bifida operated unselectively at birth 62% reached the twelfth birthday and 54% could be expected to reach the nineteenth. Many of the most severely affected cases survived; if they died the cause was usually renal failure. Bronchopneumonia was the main cause of death in infants and hydrocephalus in the older children. Girls outnumbered boys by 1:1.3 and, although they were more severely affected, their survival equalled the boys'. Awareness of the high survival rate which results from the treatment of spina bifida is important for the parents of a newborn baby. It is also a prerequisite in planning provision for the young adult.
We agree with Lazaro-Munoz and colleagues that patient preferences matter. Clinicians should strive to elicit and respect those preferences. We take issue, however, with how the authors apply this precept to “preventive genomic screening” (PGS). We believe their argument is flawed by the failure to distinguish screening from other medical care, or to acknowledge clinicians' responsibility to weigh the potential for benefit and harm in determining what healthcare choices to offer.