Deadly experiments by mad scientists are a staple in horror movies. But, surprise. A 2014 reality exposes a notorious medical experiment costing tax payers over $20 million. The patients were helpless. Their parents were hoodwinked.
Sure, theatrical medical experimentation is suspenseful and entertaining when we know the scene is fiction and no one is actually suffering. The same procedures are frightening and offensive when we know they are masterminded by U.S. government doctors and carried out under a pretense of consent by vulnerable parents of desperately sickly premature babies.
News of oxygen manipulation experiments on extremely premature infants has just hit a spotlight on the national stage. In the wake of tragic deaths of veterans in government medical facilities due to premeditated neglect, this infant “project” is especially alarming.
To further add insult to injury, the target infants are those of disadvantaged, desperate single mothers who typically are at the mercy of public assistance, and by and large are not prudent medical care consumers.
The Daily Signal reported these details on June 3, 2014:
A government-funded experiment put the lives of premature babies at further risk, and some parents say they didn’t know.
“I remember them telling me they were a support group who would pretty much hold my hand through the developmental process,” Sharrisa Cook [mother of one of the infants]says.
But in reality, the study was much more than that. It was a national, government-funded experiment on 1,316 extremely premature infants in which their fate may as well have rested with the flip of a coin.
Other single moms who were among those persuaded to sign up their critically ill babies at the University of Alabama at Birmingham Hospital describe similar misunderstandings of the study’s purpose.
Bernita Lewis, then a 22-year-old student, says she enrolled her premature newborn, Christian, after medical personnel told her it simply was to gather data such as weight and height.
And Survonda Banks, then 21, unemployed and on public assistance, says someone handed her the consent form on her way in for an emergency C-section at 28 weeks of pregnancy. Banks remembers being told only that it was a way to help her baby, Destiny.
Today, nine months after the federal government convened a public meeting to examine the subject, NIH and HHS officials have yet to propose a remedy to avoid a repeat of the controversy that erupted from the multiyear study.
“The word ‘unethical’ doesn’t even begin to describe the egregious and shocking deficiencies in the informed-consent process for this study,” says Dr. Michael Carome, an internationally recognized expert on research ethics with the Washington, D.C.-based consumer watchdog group Public Citizen.
“Parents of the infants who were enrolled in this study were misled about its purpose,” Carome says. “They were misled to believe everything being done was in the ‘standard of care’ and therefore posed no predictable risk to the babies.”
Although federal officials repeatedly said the government didn’t know how much the SUPPORT study cost taxpayers, a Freedom of Information Act request netted internal documents that show the figure is $20.8 million.
The government-backed study is called SUPPORT, which stands for “Surfactant, Positive Airway Pressure, and Pulse Oximetry Randomized Trial.” The experiment was conducted at 23 academic institutions from 2005 through 2009 under the National Institutes of Health, part of the Department of Health and Human Services.
All three women now say they never would have agreed to take part if they had known the NIH-funded study’s true nature—to randomly manipulate preemie oxygen levels. They discovered that just last year.
This is not a story about politics, it is about a study that put fragile babies potentially in further distress leading to death and life long complications. What scares me is the mentality of the “collective good” that seems to sweeping our nation in all aspects of our life.
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