Selecting Kids with Spina Bifida and Hydrocephalus for Death - Oklahoma, 1977-1982

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Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.

It was no coincidence that the babies who died were the children of poor parents. To select the families for the "pessimistic outcome group," the doctors conducting the study developed a "formula" which they published as part of their write-up inPediatrics, the most famous and influential medical journal devoted to the care of children. This is their "formula": Quality of Life = Natural Endowment by the contribution of the Home plus the contribution of Society. In a more mathematical style it reads: QL = NE * (H + S). The doctors measured the "H" - the contribution of the home - primarily in financial terms: family income, family debt, employment and employability of the parents, etc. The parents' "intellectual resources," defined in terms of their educational level, were also included in the calculation of "H," which had the effect of crowding the pessimistic outcome group with parents less likely to challenge the doctors' "facts". Since "Natural Endowment" is multiplied by the other factors, rather than added to them, babies with a greater level of impairment (and hence less "natural endowment") were more likely to be placed in the "pessimistic outcome" group.