As the mother of a premature infant, it became quickly apparent to me that they were seen as potential science experiments:
A federal agency has found that a number of prestigious universities failed to tell more than a thousand families in a government-financed study of oxygen levels for extremely premature babies that the risks could include increased chances of blindness or death.
None of the families have yet been notified of the findings from the Office for Human Research Protections, which safeguards people who participate in government-financed research. But the agency’s conclusions were listed in great detail in a letter last month to the University of Alabama at Birmingham, the lead site in the study. In all, 23 academic institutions took part, including Stanford, Duke and Yale.
The letter stated that the study did have an effect on which infants died and which developed blindness, and that those risks were not properly communicated to the parents, depriving them of information needed to decide whether to participate.
The 1,300 infants who participated in the study, which took place between 2004 and 2009, and whose results were published in The New England Journal of Medicine in 2010, were born at just 24 to 27 weeks of gestation, a very high-risk category that is already prone to death and eye disease.
