By Sam Jewler
Press Office Coordinator
I’ve been in tense police-protester situations before, but generally in more of a civil disobedience context. It was the last thing I expected at a press conference with renowned doctors in suits and a family with a six-year-old daughter who has cerebral palsy.
But that’s what happened today when we held a press conference outside of the headquarters of the U.S. Department of Health and Human Services (HHS), where a public forum was convened to discuss revelations we publicized last spring of an HHS-funded study that put premature infants at great risk without fully informing their parents of the dangers.
As we set up our minimal props for the press conference, we were informed that we were on government property and would have to move elsewhere. We briefly debated with the security guards the difference between “government property” and “public property,” but that didn’t go very far. (Side note: Can I pay less in federal taxes now that I know I can’t put up a sign and speak to reporters in front of federal buildings?) The guards went inside, so we continued to set up, and then we started the press conference.
Here were some of the most powerful quotes from the day, after the break:
“Risks of harm, including death, weren’t disclosed to the parents when they enrolled their children … because of these types of consent deficiencies, the parents who enrolled their babies in this trial were deprived of the opportunity to provide informed consent for the research – and that fundamentally made the research unethical. … The parents in the SUPPORT study deserve an apology, and they deserve to be told what actually happened in this experiment.”
– Dr. Michael Carome, director, Public Citizen’s Health Research Group
“We were told, to paraphrase, that we would be helping other babies, and it wouldn’t hurt Degan in any way. If we had been told that the SUPPORT study experiments could possibly increase Degan’s risk of death, brain damage or serious eye injury, we never would’ve consented to her being in the study.”
– Shawn Pratt, father of Dagen Pratt, 6, who was born prematurely at 1 lb and 11 oz, after 25 weeks of gestation
“Why were we not fully informed of the risks, and why is omitting information not considered lying? We’re very blessed that Dagen survived and has her eyesight, but every day that she cries because she’s different, it just kills us. And we worry about her future as a special needs child, and especially as an adult.”
– Carrie Pratt, mother of Dagen Pratt
“My son was born at 25 weeks; he weighed 1 pound and 11 ounces. When we were approached about the SUPPORT study, of course the acronym SUPPORT suggests that you would be receiving support for the extreme prematurity of your child. We never thought that he would be harmed throughout the study.”
– Sharrissa Cook, mother of prematurely born baby Dreshan Collins
“I’m a historian of medicine and a medical ethicist – I can tell you historically that when ethical mistakes are found like the problems in the SUPPORT study, the usual reaction is to tighten regulations. Instead what we see going on today is really worrisome; what we’re seeing is an attempt to basically change or reinterpret the regulations basically so that we can cover this up and say that this mistake didn’t happen. … This study may in fact be the tip of the iceberg in terms of problems with informed consent. I’ve been collecting a lot of stories of various kinds of studies going on in America today where people are either inadequately informed or not at all informed that they are in research studies.”
– Alice Dreger, Ph.D., professor of clinical medical humanities and bioethics at the Feinberg School of Medicine at Northwestern University
Soon after Dr. Dreger spoke, while reporters were asking questions, about 10 Department of Homeland Security vehicles showed up, sirens blaring – and we were told to move to the sidewalk, about 70 feet away from the building.
We don’t know how high up the word was given at HHS for us to be kicked out, but we’d like to think that if the injustice of us holding a press conference on government property can be corrected, so can the injustices of thousands of babies being subjected to risky experiments without the informed consent of their parents.