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.

At the end of this video is when the police show up.

 

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Comments

  • Tom

    We’re getting to the U.S. Department of Health and Human Service. They don’t want this getting out so now they are going to desperate measures to try and block us out.

  • jay glenn

    this is a corporate fascist police state.

  • I am so glad we have the Homeland security to protect our taxpayer funded government offices from taxpayers.

  • SHARON SANDERS

    Are we losing every shred of free speech and the ability to disagree with authorities. The conflicts of interest between universities, doctors, pharmaceuticals, hospitals in which everyone scratches everyone’s back leads the public to have very little faith in any wall separating science from science fiction, facts versus convenient outcomes for money, drugs that really help versus off-label uses for profit. Regulators are coming from the same industries they once led. We see these conflicts in every industry.

  • Ron Tschudy

    You know you’re doing well in a game when your opponent feels he has to foul you.

  • This is a constitutional issue. HHS works for President Obama as Chief Executive. Obama is a constitutional scholar. The Police must not break up a peaceable assembly, as guaranteed by the Constitution. All over the country the Police must be schooled intensively in the citizen guarantees of that supreme law of the land. They must refuse to violate its provisions.

    What has been happening in innumerable peaceful assemblies across the nation is illegal disruption, even active assault by police. For example, at U.C. Davis the President of the university ordered the police to pepper spray peaceful students sitting on a campus sidewalk!

  • Michael MacPherson

    We have a police state in this country, free speech is gone and our other liberties are being extinguished. Who does the government think pays for federal property? The government acts as if the money to buy government property came out of their pockets, the money that bought government property was paid for with tax money so there fore the taxpayers own government property. The government is playing the we have more guns and there fore more power then you and we do not have to recognize your rights.

    The government thinks it is okay for citizens to have the rights guaranteed in the Constitution and the Bill of rights as long as it does not interfere with the Government. When we elect a politician into office because they told the most convincing lies about serving the public, it is like hitting the lottery for the winner, who gets to entertain Wall Street lobbyist for huge bribes to let big Corporations write their own laws.

    If it does not sink into our heads that Wall Street is running the government and we no longer have a democracy, Then we will not recover and not see democracy in our life time, because we now have a plutocracy. The government is working day and night to totally extinguish the Constitution and the Bill of Rights. During the Iraq war the government gave the use of our troops to the oil companies so they could get Iraq’s oil. The Oil companies are taking control of the properties of hundreds of people for oil drilling and the building of the XL pipe line and the government is not going to tell us that we will not see a single penny or a drop of oil, all the oil from US land is going on the international stock market.

    Either we stop burying our heads in the sand or This country will be no different then the Communist Soviet Union was. This country is set up so that only those who can afford their Constitutional rights and the rights contained in the Bill of Rights to have these rights. If a business, Corporation, the Police or the Government violates your rights, where do you go to get justice? If you cannot afford an attorney to fight for your rights you are out of luck. The country is not set up for the poor and middle class to be able to fight for their Constitutional rights if violated, this is a country for the rich and privileged.

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