As history shows, human subject research is fraught the potential for terrible abuse, requiring strong government regulation and oversight. This is particularly true when the people being experimented upon are vulnerable or desperate. Now, the government has accused scientists at several universities of failing to disclose the dangers of research on premature babies. From the New York Times story:
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…
The letter said that “the researchers had sufficient available information to know, before conducting the study, that participation might lead to differences in whether an infant survived, or developed blindness, in comparison to what might have happened to a child had that child not been enrolled in the study.” The risk the consent form did mention was far less significant: abrasion of the infants’ skin by an oxygen monitoring device. It also said there was a possible benefit to participating — a decreased need for eye surgery depending on the group the infant was assigned to.
This still remains an accusation, not a final determination of misconduct. But good on the government for staying on top of this. The trust of the people in the research enterprise depends on maintaining good ethics, most particularly when the subjects are vulnerable human beings with consent obtained from parents desperate to help their critically ill baby.